Before we close the door on 2009, I’d like to briefly reflect.  I started the year in Australia with some dear friends.  I discovered NLP and qualify as a Neuro Linguistic Practitioner, attend NLP groups and became an Affiliate of the Association of Coaching.   I spent time with my Mum before she passed away in August and understand more about her past and be able to share with her some of my dreams for my future.  I was diagnosed with a rare cancer, Phyllodes Tumour (Cystosarcoma Phylloides).  Although I, of course, wouldn’t wish to re-live my 2009, I’m grateful for the experiences and learnings that I gained from my 2009 and for the changes in my views, priorities and outlook this has given me. 

Before we move on, I would also like to say a truly heartfelt THANK YOU to all of you who listened to me, shared my journey, held my hand and supported me.  I’m incredibly thankful to have such special friends and family (new and old, near and far). 

I believe that in life we all have choices and should try everything, at least once, to see if we like it... I can honestly say that I’ve tried cancer and I didn’t like it much, it just didn’t agree with me, we’re not compatible.  No, it’s just not for me.  I know I don’t have the receipt but I’m sending it back to wherever it came from.  So for once you don’t need to bother trying it... I’ve done it for you... take it from me, you won’t like it... tick that checkbox and move on!

Now to move on... ‘fession time.  I’m not one who has ever written a long list of resolutions, simply because by the time I get to write them down, I’ve usually already broken them... so I have a wish list or a list of goals to achieve in the coming year...

My 2010, in no particular order...   I’d like to do more fun stuff.  I’d like to travel more.  I’d like to catch up with my friends more often and to meet up with those of you I’ve not seen in a while... some of you for a very long time.  I’d like to lose weight.  I’d like to love.  I’d like to have a laugh – a real laugh, a laugh that sneaks up on you and almost makes you pee your pants!  I’d like to go to the opera.  I’d like to go sit in Berkeley Square.  I’d like to learn more and put into practice NLP and coaching techniques.  I’d like to see H&B have the best wedding day ever.   I’d like to eat some really really good sushi.   I’d like to hug and be hugged.  I’d like to hang out in some of the old haunts with my friends and dine in style with others.  I’d like to prepare some fantabulous meals and share them with my friends.  I’d like to always remember that there is no such thing as failure – just that you can learn from all experiences.  I’d like to be living in my own house again.  I’d like to remember what it’s really all about.  I’d like to finally create the art installation I’ve been dreaming of.  I'd like to see the NHS system have a code for recording Phyllodes Tumours.  I’d like to feel loved.  I’d like to take breakfast at The Wolseley, take tea in Sketch, champagne at The Soho House, eat a degustation menu at The Square and closing drinks at Mortons (foodie friends apply here!).  I’d like to feel appreciated for the job that I do.  I’d like to hear Celeste, Martha, Evie and Naomi call me Auntie Anna (or I’ll accept HAuntie HAnna).  I’d like to always remember that life waits for nobody.  I’d like to make a difference.  I’d like to have less clutter and be more organised.  I’d like to put in the application for a bench in Berkeley Square.  I’d like to support others the way that they’ve supported me.  I’d like to label up all my photos and to file my paperwork.  I’d like to put all the vinyl into a digital format and be able to listen to it on my ipod.  I’d like to remember those who are no longer with us by recalling funny stories and kind memories.  I’d like to jump on a plane and not know where I’m going.  I’d like to make someone I don’t know, smile!  Most importantly, I’d like to remember how to live again.

So hold on tight... I’ve got a lot to achieve in 2010!

Finally, a few 'borrowed' words... 

Yesterday is history.  Tomorrow is a mystery.  And today?  Today is a gift.  That's why we call it the present.  ~Babatunde Olatunji

Why be saddled with this thing called life expectancy? Of what relevance to an individual is such a statistic? Am I to concern myself with an allotment of days I never had and was never promised? Must I check off each day of my life as if I am subtracting from this imaginary hoard? No, on the contrary, I will add each day of my life to my treasure of days lived. And with each day, my treasure will grow, not diminish.  ~Robert Brault

As you know I'm very excited and grateful to have received a grant from the Young Survivors Conference Scholarship Fund which will cover a large chunk of the expenses and enable me to go to 10th Annual Conference for Young Women Affected by Breast Cancer in Atlanta USA in February 2010.  I am acutely aware however that for many of my Phyllodes sisters (and other breast cancer survivors) without one of these grants they are unable to attend.  In the USA they have to make concessions to ensure that they are able to cover the cost of their medical bills.  I hear horror stories of some who have to put on hold their medical treatment whilst they save up.  For all the criticisms we may have of the NHS (which I personally cannot fault during this journey), we have to remember and be sooo grateful we don't have to choose between holiday/food/mortgage -v- medical bills or weigh up the risk of going without or delaying radiation or further surgery until the funds can be raised. 

 

The information, workshops, and seminars at the Conference, I believe, will be invaluable for us all attending, as will the cameraderie of knowing that we're not alone and for me personally to meet my 'virtual' Phyllodes sisters too. 

 

So whilst I wait for further news about my own situation, I'm asking you to help me raise money for the Young Survivors Conference Scholarship Fund.

Living Beyond Breast Cancer and the Young Survival Coalition’s Annual Conference for Young Women Affected by Breast Cancer is the only international event focused on the unique needs and issues faced by women diagnosed before age 45. Created by young women for young women and their caregivers, the conference has grown to one of the largest meetings in the world for women with a history of breast cancer.

This one-of-a-kind event features educational programming focused on every phase of a young woman’s breast cancer journey: from recent diagnosis, in treatment, living with advanced breast cancer to post-treatment — and years beyond.

Please donate whatever you can so that young women from all around the world can participate in this amazing event.

Follow This Link to visit my personal web page and help me in my efforts to support Living Beyond Breast Cancer

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Thank you. 

I've had a lovely Christmas with my family - eaten too much, played with lots of board and card games, made things with my neice's arts and crafts gifts and even attempted a jigsaw.  I enjoyed spending time with everyone and catching up without rushing off to get home.

 

I love the magic of Christmas and I'm reminded frequently that I can be a very naughty but nice Auntie Anna, teach my neices, nephews, Godchildren and anyone under the age of 16 to misbehave or be just that little bit daft and giggly... sometimes be able to get away with things that the children themselves get told off for by the parents and then conspire with the children to know that they are allowed to be children for a very very long time... hey I'm 42 and determined not to grow up!

 

But where do they get the endless source of energy from?  And how do the parents keep up without needing to disappear for several hours 'shut-eye'? 

 

Small people are quite lovely but I'm always grateful to give them back!

 

I hope you all had a wonderful Christmas too, however and wherever you spent it.

The joy of internet shopping has helped me out this year.. final parcel has just arrived (not cutting it too tight!) 

 

Mr Snowman (AKA Sebastian) survived the thunderstorm last night.  Whilst the rest of the garden has been cleared of snow, he remains steadfast with his hat on and Miffle and Wiffle at his feet.

 

Wishing you all, wherever you are, a joyful and happy Christmas. 

OK so the best Christmas present would be for someone to tell me, with absolute authority, that I'm all clear and there will never be a Phyllodes recurrence for me... if only I could tell you/me that that is what my early Christmas present was...

 

However the second best present would be exactly what I got news of today.  I received confirmation that my grant application to attend the 10th Annual Conference for Young Women Affected by Breast Cancer in Atlanta USA in February 2010 has been approved.  The Young Survivors Conference Scholarship Fund has provided me with approximately half the cost of my flight, accommodation and registration fees. 

 

I can't stop smiling.  I'm soo looking forward to meeting a few of my Phyllodes Sisters who I've met via the internet and whom are also Phyllodes survivors or relatives of someone diagnosed with Phyllodes.  During my journey these ladies have kept me sane, made me smile, listened, researched, answered my questions, shared information and personal stories, held my hand and provided, virtually via the new-fangled-interweb, gentle but ever-so-important hugs. 

 

In addition to meeting in person some of these wonderful people, I'm hopeful that the conference will also allow me to learn and understand more about breast cancer and what it means to so many people; how to manage cancer diagnosis/surgery/therapy and the effect on your body and mind; to heighten awareness of Phyllodes (perhaps more awareness of Phyllodes will ensure that more than 20% of cases are diagnosed correctly first time meaning that many patients will only undergo one surgery for its removal with clear margins); to bring away from the conference information and guidance that perhaps can be used to help other Phyllodes survivors with their journeys and, selfishly, me with the closing of my own; and finally, perhaps some information that I'm able to impart with the medical teams in the UK from research and professionals in the USA.

 

Now all I need is the phone call from the team performing the further examination of the pathology with the all clear and I'm done!  Hmmm perhaps I shall write a quick note to Santa and send it up the chimney...  That list is pretty long already, would it be greedy to have a list with eleventeen requests on it? 

OK so when it snows in the UK everything just stops... it's not like (this time) the weather people didn't actually give us at lest 3 days warning!  So why was I snowed in last night and  unable to drive to Millies for a pre-Christmas Christmas with the kids (me being the oldest kid of them all).  We'll try again...

 

You'll be pleased to hear however that I've been using my time constructively... I got up uber early to build a new friend... a huge snowman!  He can also keep my cat (Miffle) and dog (Wiffle) company in the garden - don't they look cute at his ankles?

 

Pretty impressive eh?

 

Hey, building/making my new friend at least took my mind off the fact that I'd been up since the wee hours as Niggling Norman has been extremely painful. 

Whilst I wait further for news, I realise that I haven't actually into gear and sorted out Christmas cards and present shopping yet... so since a lot of my friends are going to be reading this blog, I'll cheat!  You need an ickle bit of imagination... here goes... are you with me?... Imagine, Imagine, Imagine the postman coming up the driveway, can you hear his feet on the icy pathway?  Can you hear the letterbox being opened and the sound of the card dropping onto the mat?   Rip open the envelope (saving the stamp for charity)... On the front of the card is a cutesy little seasonal picture, bright and cheerful and you open the card to read  "Happy Christmas and a wonderful New Year.  May 2010 be a happy, healthy and wealthy year for you.  Lots of love AnnaGoAnna"  (OK so I feel vaguely bad but I've missed the last posting dates and to be honest you'd expect nothing different to previous years, would you?)

 

Meanwhile back at the blog, I'm just getting on with it all.  I still have the niggling pain which is beginning to make me feel permanently nauseous but perhaps the tissue instead of just wriggling into the cavity is now getting into the festive spirit and doing a little jig. 

 

I also found a very informative blog relating to Phyllodes that I want to share with you as it fairly concisely explains why I'm pursuing clarification regarding sufficient Phyllodes margins and was considering radiation.  Wendy is another survivor who has researched this herself and does not, I believe, have any medical background but it's fair to say that we, Phyllodes Sisters, need to find answers to our questions for ourselves and are wonderful at sharing our findings amongst our unique band of warriors.  Wendy's Blog

I'm getting a little bored of the niggling pain but others who have had similar surgery have been told that it could take months for the tissue to settle, so I should just put up with the little niggle, perhaps give it a name (Norman?) and send it a christmas card... but it's not getting one next year so it should just blinking well enjoy the moment and then bugga off! 

 

After a day of relative relaxation and yet more sorting of Mum's photos and paperwork (believe me there's heaps of it!), I headed out into the icy cold weather and snowy roads to a Christmas party with some friends I've not met up with for many years.  How lovely is it to just fit in where you left off so long ago?  There's something so unique and comforting about being able to do that and indeed very special people to do that with.  A really fun and joyful night filled with frivolity and laughter.  Santa was there too to pass around some early presents - Louise had even created homemade crackers (thanks to Kirsty Alsop's TV programme!) with some wonderful gifts; a festive teatowel which we were all to use instead of paperhats, plastic spinning top, green and yellow plastic bling and of course the obligatory festive joke or two (actually the below are my own selection of bad ones as sadly I could only remember a few when I was there!)

• What do you call a rich elf?
• Welfy
• What's brown and creeps around the house
• Mince Spies
• What did Adam say the day before Christmas?
• It's Christmas Eve
• What sort of mobile has santa got?
• Pay as you ho, ho, ho

I also, (it's a girl thing) wore a non-surgical bra with my lovely new insert from Rigby & Peller.  I didn't feel lopsided or odd and didn't feel that anyone else noticed... maybe I can do this!

 

Thank you Adrian and gang for a really really super evening and making me laugh... really laugh!

Will I hear today or Monday about radiation? 

 

Hehehe, almost at the second I hit the 'save' button, the phone rang.  The decision is in... well mostly... The sarcoma group decided that they do not, on the information they have, believe that radiation therapy is the best option at this time... but that further surgery may well be.  They are awaiting a further examination of the cavitectomy pathology and may need to take a further slice for testing.  This process may take four to five days and with the seasonal break, I have been advised that I should have further information by the frst week of January. 

 

Earlier this week, my GP called me to say that he believes a second opinion would muddle my case and that I am already in the best of hands and in the centre of excellence for this rare cancer.  My GP has, after all, known me for a very very long time and is someone whose advice I trust implicitly.  He also admitted that he's been keeping a close eye on my case from his GP surgery and may have been assisting with getting seen by the right people - he really is the best GP in the whole universe. 

 

The irony today though is that the radiation/sarcoma team have referred me to the same person I was going to get a second opinion from!  Small world eh? 

 

Despite all the above and knowing that I am being looked after extremely well and that the level of intrigue into this rare cancer has assisted my case being seen by the very best people, I can't help it but am very upset and tearful after the call.  I had really hoped that it was going to be a 'yes' or a 'no' answer or that someone was going to say 'we should do x' - sill me, it appears that I'm becoming dillusional.  Is this a side affect of Phylllodes?

 

To update you all a little bit too about the niggling pain.. it's certainly there today.. perhaps I did too much yesterday or perhaps the tissue is wriggling around again and jumping into the cavity - I wish I could draw you a picture of what I have in my head about this, totally insane!

 

BUT today's events has crystallised my mind that I should attend the 10th Annual Conference for Young Women Affected by Breast Cancer in Atlanta USA in February 2010.  I have applied for a grant which will be very welcome funding given the recent outgoings and debt looking after Mum and then sorting out her affairs.  There are a couple of other Phyllodes ladies attending the conference that I have met online and who have been a huge support and supply of information and inspiration to me.  I shall look forward to meeting these ladies but also we will, together, be able to get some answers or be able to supply some answers to the professional medical teams attending.  Maybe our being there will raise awareness of Phyllodes as a very real cancer affecting the breast tissue and we may bring back with us, to our respective home locations, information about the conference and our learnings to share with our medical teams and other Phyllodes survivors in their own journeys.

Today my brother, uncle and I spent the day at Mum's property going through and boxing up the final sentimental items and discarding the remaining items for charity or the skip.  It's such a sad thing disposing of possessions that obviously meant something to Mum but holds no memories or re-use for us.  We eventually closed and locked the doors on the empty house at dusk with a sprinkling of snow falling on Mum's much loved garden.

 

However now my little cottage is squeaking as the seams whilst I go through paperwork and photos and those possessions that I'm not quite ready to discard or just don't know where to let them go to.

 

I'm exhausted, I'm not sure we sat down all day - hot bubble bath for me!

Time to give you all an update as I've received a number of calls, emails and anxious texts asking about the bump and irritating pain... 'does that mean it's back?'... 'is the silence something we should worry about?'... 'tell us how it really is?'... etc.  So, here goes.

 

I've decided to take a new approach to this cancer-Phyllodes-thingy.  For those of you who know me well, you will know that I'm generally a very annoyingly positive person who can see the good in anyone (oooh how that's got me in to trouble in the past!!) and can see another angle on any situation leaving the only options for a brilliant ending or a wonderful beginning!  (Oh pants, I'm making myself quite nauseous - am I really like this?). 

 

Anyway, my decision is I'm just simply NOT going to have this cancer-Phyllodes-thingy in my life (or body) any more.  It's sort of impeded my living (read 'misbehaving') and taken up a huge amount of my time and energy - not always in a good way.  Enough is enough - So long farewell, auf weidersehen good-bye!  (I bet there's a few of you humming that little song from the Sound of Music now, hehehe!)  Or for the Aussies reading this "bugga off Phyllodes" and for my Phyllodes sisters in the US "Phuck Phyllodes".

 

The bump and irritating pain is simply just tissue reshuffling into the cavity - yes, I have decided that too - not confirmed by anyone medical but it's MY body and I've decided!

 

Seriously though, I've also been thinking a lot about 'why me' and 'why now' did the pesky Phyllodes tumours arrive.  My conclusion is simple - it was the right time and in a funny way a good thing and one for which I'm (oddly) grateful.  It made me think.  It made me consider what's important and what's not.  It made me appreciate what I have now and also what I've lost.  It made me reevaluate friendships and relationships.  Most importantly, I think, is that it made me stop.

 

Most people (me included until this blip) rush from one thing to another, whether it's life, career, family, making money or making ends meet.  In my case for quite some time it had been looking after Mum's wellbeing and sharing the care arrangements, bills, outgoings and worries with my brother whilst trying hard to balance my own needs against the increasing needs of Mum. 

 

We all wish we had more time but still manage to squeeze in another hour at work or another activity but never stop for long enough to listen to ourselves and to really hear the answers.  Often our work/life balance (or perhaps responsibility/life) is skewed and we feel pressured to perform or put in the extra hours, often to the detriment of things that make us happy, satisfied and content, such as our family or friends.  When was the last time you really really stopped?  I mean really stopped.  Previous to this blip, once in a while I'd have a whole weekend whereby I had nothing much on and would sort out some paperwork or clean out a cupboard and feel good about the new space or relieved that the long outstanding task had been finally done.  I then thought about what I would do next or what's next on my list but I never stopped long enough to see beyond my list.  I didn't think about what was really important to me just what was next.  I certainly didn't think about what would have happened if I was no longer here and what my living would have meant to others - have I made a difference to just one person or one thing - I have wondered recently if the tumour had developed into something else and I hadn't lived what would that mean.  Would I be content with the memories I leave behind?  Would I have left enough to be remembered well?

 

You see, I'm lucky to have had this blip.  I'm grateful to have worked out, at least in part, what's important to me, who is important to me, what I would like to achieve, what I would like to be remembered for and if it's possible, would you write my epitaph for my headstone in a way that I'd be proud of until the stone dissolves?   Life IS short and I've always tried hard to be the best I can be, to bring a little happiness and laughter into other peoples' lives and to listen and be a good friend or confidant (to any one of any age).  Sometimes I may have got it right and at other times, I know I have not.  I hope however that where I have not people know that I've tried and just got it a bit wonky!

 

So, back to how I am.  I'm great.  I'm positive.  I'm determined. 

 

Next medical bit for me.  To radiate or not to radiate - I'll hear either Friday 18th or Monday 21st December from the team atheir decision. 

 

Until then, I'm looking forward...

A very quick update today to say that I had my second night out last night since October...!!!  Thank you Toby and Vix for organising a night out for me, at your house.  Truly lovely to see some of my beautiful friends and catch up.

 

Today was another step nearer ending another chapter in my life - sorting out Mum's house and possessions.  I'm exhausted after packing, moving, removing and organising.  Thank you Kati and Tom for your fabulous help today. 

 

In a week's time the house will be gone and we'll be left only with the memories of Mum in it.  It's been difficult, emotional and bought back memories long buried to laugh and cry at - a hard task picking through and packing up Mum's 70 years of life, married to my father, my stepfather, children and grandchildren, friends and occasions. 

Quiet but constructive day.  I got lots done (well by my recent standards) and was able to ignore the irritating little niggling pains... definately decided they are just due to the squishy tissue reshuffling into the cavity and I'm not going to let them p me off any more. 

 

20 days to sort it all out, to start partying and begin the rest of my life... Watch out 2010, I'm starting to plot!  Ideas and offers please...

It's funny but Mum's house really is just a house made of bricks and mortar.  It's like the soul has gone and Mum is no longer there.  Today my big brother and I managed to clear a lot of the house - why was Mum such a hoarder?  The war and rationing ended years ago!!!    But she would say 'you never know when you might need those eleventeen plastic tubs'! 

 

I also oversaw my removals company taking the items that I can't bear to be without, such as the baby grand piano that I learnt to play as a child and the four poster bed that I had sleepovers in - I was such a princess!  Sadly though I don't have anywhere to put these lovely items so they've gone off to storage until I find somewhere to live that can fit them in!  Hahaha like that's going to make me grow up!

 

Medical stuff - well apart from now feeling totally broken and uber exhausted, I have nothing to report... nearly!  I received the copy of my referral letter to the radiation team and had to have a little chuckle at the final paragraph "I look forward to your urgent assessment - she is very well informed."   Read what you will in to that, I'm reading "she's educated and is able to research and read"!! 

Tears and tiredness today following my day out yesterday and I'm sure not helped by the reruns of conversations and reports all night!  A somewhat constructive day though sorting out paperwork, medical referrals, appointments, removals and estate papers for Mum's house and more admin, admin, admin... oh and a little snoozing on the sofa!

A busy day for me with a GP and dentist appointment.  A short while ago I would have also managed a bit of retail therapy, lunch with the ladies and an evening out or a glass or two of champers in the Fifth Floor!

 

It's funny that when you know your GP for so many years and know that he knows me as well as I know myself, he can reduce me to tears just by simply asking how I really am.  He knows that the red hair, smiley face and one liner jokes also hide many emotions about Mum and my rare and odd cancer.  Bless him he's been keeping up with my case ensuring that I'm getting the best possible treatment in the NHS and that my case is referred upward if nobody knows.  My medical guardian angel.  We were able to discuss what has happened so far, what may happen ie radiation, recurrence or mastectomy and although most of our discussion was reaffirming my understanding and research, I know that I have his full support.  Oh I know you'll be asking... no I didn't ask him about the pain that's back - I'm hanging my hope that it's just the tissue reshuffling - I've got to or else I'll go mad!

 

As my dentist appointment was a few hours away and my boob was a little achy, I figured that I needed a 'pick-me-up' that involved relaxing and not walking around (without champagne!).  Where better to go than the Urban Retreat, the beauty emporium in the top floor of Harrods, for a hair cut and manicure.  What awesomely lovely women who pampered me and then arranged for me to have a (free) complete make-over with Laura Mercier.  I look a squillion dollars tonight and feel a little naughty not going to the Fifth Floor for a glass or two of champagne!

 

I swanned out of Harrods and across the road to Rigby & Peller where I had arranged for a bra fitting.  I desperately need/want to get back into my lingerie and out of these medical bras but know that I don't quite have a matching pair!  The consultant was lovely and reassuring about what can be done to even me up, without cosmetic surgery.  I left with some silicone enhancers/inserts as a temporary fix (if I get out of these medical bras!) however she recommended that I come back in 4 weeks for a proper fitting as the scarring is still very red and the lump/cavity area is so tender and sore.  She also explained that they are able to do pretty much anything with inserts, pockets, prosthesis and even made to measure bras.  Maybe I will get the emerald green lingerie I've been dreaming of.

 

Final appointment of the day was with my dentist, Ann.  I'm incredibly lucky that like my GP, Ann has been my dentist for over 20 years and knows me very well.  We've lived through years of stories and gossip about our lives and she, like my GP knows how to press my buttons and understand me.

 

It's been a strange day with many mixed emotions.  Most of all wonderful words of support and encouragement with a plethora of hugs from people who have known me for 20+ years and beauticians, hairdressers and sales consultants that I've only just met.

I received the call from the radiation clinical oncologist following the referral.  She (Anna!) said, like so many others before, that she doesn't have experience of phyllodes tumours and has therefore referred my case higher up to a sarcoma group meeting on 18th December.  She has been in email contact with my surgeon and I felt from our brief conversations that perhaps he had, in addition to the medical aspects, also mentioned my eagerness to understand, question and research.  Anna was keen to understand more about phyllodes tumours and we talked about the Pezner and Barth reports (which I later emailed through to her... hopefully this will save her some time rummaging for the same data).

 

The calls gave me an opportunity to understand more about radiation therapy and perhaps the reasons for reluctance in my (or other phyllodes) case.  If radiation is given at this stage it may reduce the risk of recurrence but that there are other risks associated with the effects of radiation.  Radiation may mean that any further surgery is hampered by the tissue damage.  So if any recurrence was to occur, the surgeon may have difficulty identifying where any tumour and stroma (tenticles) are within the damaged tissue and vein network.  I hadn't realised (probably naively) that the scarring of radiation may have adverse affect on future surgical options and any reconstruction.  Although as I've said before, should I need a mastectomy I would not persue a reconstruction.
 
Anna has confirmed that she will be in touch in the early evening of 18th December or 21st December but to keep the afternoon of Monday 21st December free for an appointment, should radiation be considered the right course of action!
 
Fingers crossed we'll get there soon. 

Lovely day spent with my Pa and his wife, relaxing and chilling whilst being plied with delicious food.  Nagging pain still there though and has been sharper this evening.  It must be the tissue reshuffling, right?  However I've got an appointment with my GP on Tuesday so will ask his advice.  I'm over this pain stuff but thankful that I'm a girl - imagine how much worse it would seem if I were a man! 

 

I wonder if I'll hear tomorrow from the radiation therapy hospital?

Definitely a PJ day today.  Miserable weather outside and the pinching pain is much worse - perhaps I did too much yesterday.  I've also noticed that there's a bump where the lumps were removed - hopefully just the tissue/cavity healing/reshuffling.  I'm hoping this lump isn't related to the pain. 

 

I was surprised last night that some of my colleagues didn't say 'hi' to me as they've not seen me for quite some time.  The company is quite small and I would have thought that they'd have missed me and hoped that they'd have asked where I was - maybe I think too much of myself but am a little disappointed that some didn't make any effort.  Perhaps naively I'd figured that putting my journey on the world wide web would mean that the url would be distributed if anyone asked how/where I was.  I'd also hoped that by doing this www I would avoid the 'have you been on holiday' questions!  I think I shall start creating an itinery and a photo album so that I can pretend I have been away!  Hmmm South America??

I know I've giggled a little at my ability to stalk the medical world and find out for myself information about phyllodes tumours and then attempt to relate my findings to my case.  I'm also, although some of you may disagree, intelligent and literate.  Thank heavens - I'm continually reminded that MY health is exactly that, mine.  How do others cope when they don't have access to the internet or are nervous of chasing up appointments or seeking other opinions - is this why some cases are caught too late for some?

 

Turns out that the referral to the radiation team appears not to have been sent/received.  My chasing up yesterday worked - they've faxed it over today!  Just as well that my research has told me that, if possible, radiation should only be done once the surgery has healed sufficiently.  My nurse has said that if I don't hear by Tuesday to chase again - oooh and I shall!

 

First evening out since October before Op No. 1 for the office Christmas party.  Managed to stay until the end of dinner and now, although a lovely evening and a chance to catch up with colleagues, am somewhat regretting it.  Exhausted and definate pinching pain now.  Looking forward to a quiet day doing nothing tomorrow!  I did however get to wear my Christmas tree earrings for their annual outing, complete with baubles.

Apologies for those of you who check in every day - no update yesterday.  One big task organised yesterday - removals of the items I'm inheriting from Mum's house into storage.  Hopefully will be collected next week.  My sister-in-law and I also managed to pack up a couple of boxes and clear out a few more drawers and cupboards - slow progress when I can't lift weighty boxes and I ache and pinch.  I collapsed in a heap when I got home, so apologies for no update. 

 

Today though I've been Little Miss Proactive.  (Is there a Little Miss book with that title? - Roger Hargreaves??)

 

I've sorted out lots of correspondence and paperwork for Mum's estate and I've chased up the radiation appointment - will await a return call.

 

Excellent news (No. 1) - the clinician for the phyllodes trial returned my calls.  She's not yet received my consent form but explained further about the trial.  All the data will be anonymised and I will not be told anything specific relating to my case however as I've said all along, if my case helps one more person, in any way, I'm all for it!  The trial is essentially looking at the genetic makeup of each sample, looking at how the genes may relate to the type of tumour ie benign or malignant and also if this has any bearing on recurrence of the tumour.  We talked further about the trial and I'm really hoping that they are able to publish a definitive paper following the trial. 

 

The clinician and I also discussed my case.  Although she has not seen any of the histology or scan results, I wanted to ask for her opinion with regard to what she considers a clear margin for a phyllodes tumour really is and also if she feels adjuvant radiation therapy is of benefit after surgery.  She believes that adjuvant radiation is only needed IF surgery has not produced definitive clear margins and that a clear margin for phyllodes tumour is the same as other breast cancer.  She is also of the opinion that phyllodes does not respond to radiation therapy!

 

We also discussed the differences of opinion between US and UK medical teams ie the US usually conduct a full mastectomy and radiation therapy for malignant tumours.

However the problem is, as we all know by now and was reaffirmed by the clinician, is that there simply isn't the data or case reports that can be relied upon to say that this or that is the right thing to do or indeed not to do!

 

I need to, for my own peace of mind, understand totally that a sufficient clear margin has been achieved surrounding the entire cavity through the surgeries performed.  I would also like to discuss, with someone who has seen and reviewed the pathology and histology results, the effectiveness of adjuvant radiation therapy.

 

Excellent news (No 2) - Another friend of mine has contacted a family friend who has agreed to review my case, histology, pathology slides etc and provide a second opinion.  This will allow me to ask the questions that I need to ask and perhaps to settle my mind about what I should be chasing for or not. 

 

Although I have absolute faith in my surgeon's capabilities but am acutely aware that there is little information or guidance about phyllodes or indeed little experience in dealing with this type of tumour as it is simply so rare - a consultant may never see a phyllodes tumour.  One thing that I miss with the NHS in the UK is simply that the time allowed for each patient is so small.  As you will know having read my blog so far, it is usually after the consultations, when the shock or reality of what has been said sinks in, or simply after the long words have been googled and researched, that the questions then emerge - and then who can we ask?  I do however, have to commend the job that my consultant and Macmillan nurse have done, and do every day with so many patients.  An incredible job... just wish there was a little more time and a few less patients!

I've heard a lot of people say that once you've had cancer you will always be waiting, for something.  Whether it be waiting for clues (hoping for none but checking and rechecking every day that it hasn't returned), waiting for the next appointment and the letter of confirmation to arrive, hours waiting in medical waiting rooms (which inevitably will be a long wait, in uncomfortable chairs and a long way from the coffee machine or the toilet) and waiting for results (whilst hoping for the best and trying desperately not to think anything but the best). 

 

I had, perhaps naively, thought that the waiting would be later in my journey but today I find myself waiting or should I say still waiting.  Waiting for the pain to stop, waiting for the appointment with the radiation team, waiting to hear from the clinician with regard to the phyllodes trial and waiting to be able to sleep for more than a couple of hours at a time.

Those of you who know me well, know that I just love birthdays and Christmas and actually any celebration that provides me with opportunity to source and give nutty presents and to generally just be silly!.  Althougth, I'm more comfortable quite forgetting my birthday and celebrate much harder for others - the joy really is in the giving!  Mum was just the same and, probably, why I love it so much.  Last year as Mum was so ill, I had the joy of shopping for both us - I remember sitting on the end of her bed and arguing over who was going to be giver of a couple of items that we both loved and we both knew would cause mischief and a giggle!!

 

Mum would give presents with notes on them such as 'something to share with the children' or 'use only in your wokrplace', or 'useful for those really boring meetings' etc and they'd be random, stick on tattoos or an office desk gadget, a wind-up pair of teeth, or a whistle that sounds like a steam train or a whoopee cushion etc.  My first thoughts as I was woken up at 'silly o'clock' this morning by the usual nagging pain in my boob, 'was what will Mum have found this year', but she won't, not ever again.

 

I guess though it's the full circle of life thing and I am so very very grateful for my wonderful friends and family.  I've received such wonderful messages, emails, texts and calls from all around the world today - THANK YOU.

As a wonderfully relaxing weekend draws to a close, I am grateful for H's company, being looked after, being pampered, being able to catch up uninterrupted (thanks to grandparents for looking after H's small people) being able to be totally comfortable just chilling in our PJs. 

 

I'm still surprised though that even when I've done nothing all weekend I've still got some pinching and unable to sleep properly - when will I be able to do normal things? Have enough energy to do whatever I wish?  How long will it take for the tissue to settle down?

Having H to stay and look after me is a total treat.  After getting up late, we spent the morning in front of a glowing fire, numerous pots of tea and our not bothering to get out of our PJs (apologies to Sainsbury home food delivery man and a lovely surprise visitor, David who were greeted (and entertained) by H and I in our nightwear!).  We just about managed to get dressed and out in time to get to the spa by mid-afternoon.  My next treat was being pampered with a gorgeous vitamin enriched facial and energising body massage.  And to finish off our lovely day, roast chicken dinner and trash TV indispersed with our chatting and putting the world to rights.

 

The other treat having H with me this weekend is that she's seen so many different surgeries during her medical career and is able (fairly objectively) to talk to me about my histology report (deciphering it into short easy to understand words), about potential operations to equal up my two boobs ie a reduction operation on my left boob, also to advise about the lovely nylon stitching that's poking out.  Generally making me feel OK about me. 

 

I'm sure I'll sleep well tonight as mentally and physically I feel looked after.  Thanks H. 

There's been more of the pulling/pinching pains today and I'm not sure why as I've done very little and been careful not to push myself so am more than grateful for the expert company.  I can't wait for this weekend and am grateful for company but with no obligation to be awake, chat, do more than drink tea and be pampered and looked after.  One of my bestest friends is coming to stay, H whose birthday is one week before mine offered to come and look after me in our usual Corfu sort of a way.  H managed to arrange for her in-laws to look after her two small children for the weekend (I love them dearly but they're very fond of not sleeping and of jumping on Auntie Anna, so best they're not here!).  H and I spent a 10 day holiday many years ago where we sat on the balcony drinking tea, sleeping/napping at every occasion during the day, beside the pool or escaping the heat and taking to bed, had early dinners and early nights (following a cuppa on the balcony) for the entire 10 days.  It was only on the last day when we saw our 'retired' neighbours on their balcony and they commented that we were obviously living it up because they never heard us.. little did they know, but we were the ones getting early nights!!

 

Oooh and tomorrow we have some pampering booked... facial and massage each, probably followed by a cuppa and an early night!   I can't wait... and of course, having a Doctor in the house must surely mean I'm in good hands!

Quick update to say thank you to the groups of visitors I had today.  Colleagues and ex-colleagues took time out of their days to catch up with a glass of champagne, cake and Percy Pigs (supplied by my guests) or escort me on a short walk.  Truly loved to see them all but am feeling utterly exhausted now with some little pulling pains... perhaps for now I need to restrict my activities and increase these gradually. 

Today I wanted to thank you for your encouraging words and messages, all of which I have appreciated, treasured and sometimes made me shed a tear but mostly made me feel loved and given me a boost to fight harder.  I also wanted to say how I've been constantly surprised that my journey has been interpreted in a way that drives such messages to be sent.  I don't believe that I'm any stronger, braver, courageous or inspirational than any one of you already is or could be.  Perhaps its just more intensely highlighted because of my circumstances, or simply that I have finally understood, and lived, the well used phrase 'Fight or Flight?'

 

I would challenge any one of you reading this not to gain even a little sense of oomphf from my journey.  I would also hope that each of you will fight a little harder for things that matter, fight a little less for those things that really don't matter, dwell only on the positive and, the most important rule of all in the World of AnnaGoAnna, is to smile and spread a little sunshine in your every day.

 

Thank you for your support.

I’ve now received the histology report from the second surgery and am soo confused as to what it really means.  I’m hanging on the words that say ‘No evidence of residual malignant phylloides tumour’.  There’s a number of things that I’m unsure of (apart from the medical jargon) and will ask for some further explanation. 

 

Particuarly, I am unclear that the excised areas in surgery No. 2 completely surround the entire cavity from surgery No. 1 ie was a phylloides clear margin achieved.  My mind keeps coming back to the little tenticles that a phyllodes tumour puts out as little markers.

 

Histology report as below:

 

Clinical details:
Right cavitectomy for previously incompletely excised malignant phylloides tumour.

 

Specimen:
A. Right cavitectomy – suture new margin.
B. Further margin – lateral.

 

Macroscopy:
A.  Partially opened cavity excision, 33.7 grams, with suture on new margin.  Dimensions 50x60x40mm.  New margin inked black.  Cavity inked blue.  7 (7) gj/tb
B. Two pieces of fibrofatty tissue, 10.1 grams, each measures 35x20x15mm.  Inked black. 4 (2)

 

Microscopy:
A. This right breast cavitectomy specimen has been sampled extensively.  The breast parenchyma adjacent to the previous cavity site shows foci of adenosis and epithelial proliferation.  There is a focus of low grade papillary DCIS with associated calcifications.  This focus is present in two tissue slices and this would give an approximate dimension of 5mm.  The focus has a clearance of 4mm from the new surgical margin (A3).  There are also foci of myxoid stroma surrounding ductal structures, however the atypical mitotically active cellular stroma seen in the previous excision (09H015986) is not a feature in this specimen.  There is no evidence of invasive malignancy.

B. This lateral margin re excision specimen also shows reactive changes along with the foci of adenosis to the breast parenchyma.  There is no evidence of insitu or invasive malignancy.  No residual malignant phylloides tumour is evident.

 

A. Right breast, cavitectomy : low grade DCIS, 5mm dimension, with a clearance of 4mm from new margin.  No evidence of residual malignant phylloides tumour.

B. Right breast, further lateral margin : no evidence of malignancy.

 

Supplementary Report
PR 3+5=8
ER 3+5=8

 

I also received a copy of a letter sent to my GP from my consultant referring to a possible need for radiotherapy and confirming he has asked his colleagues at the Royal Marsden to assess my case with regard to this.  I hope I hear soon and am able to discuss this further with the radiation team.  I'm not getting good at waiting and want to ensure that any further treatment of any type is over and done with by the new year... because 2010 is going to be MY year.

 

In the meantime, I’m hanging on to the positive... ‘No evidence of residual malignant phylloides tumour’.  I just wish I could remind my tear ducts as I’ve been very teary today and not sure if it’s to do with this, with Mum or just because... oh well... positive... positive... positive.

I was thinking that I didn’t have anything of note to write today but then it all changed.  I heard back from Cancer Research UK who kindly directed me to the website and said the instructions for joining the trial were on there... hmmm wasn’t that where I got their email address from in the first place? 

 

This was shortly followed by an email from one of the clinicians (who I’d stalked by email – hmmm I am getting good at this stalking thing!) who has sent me the patient consent form and said if I wish to be included she will call me in the next couple of days to discuss.  The trial is not into how to manage a tumour or the most effective surgery or treatments as I had thought but “We are studying phyllodes tumours in order to identify genes that may be important in the development of these tumours and to try and understand why some tumours recur and others do not.” 

 

My biggest fear now that I’ve undergone two surgeries is that the tumour may recur and this will be an annual event.  Anything, I can do to help the clinicians identify why these occur and why they recur will be fantastic.  The trial doesn’t end until 2010 and the data will take some time to decipher and report upon but anything I can do to help future phyllodes survivors the better.

Oh and just one final little notelet but for those of you a little squeamish, look away now...

I have a little plastic stitching protruding and decided this morning to pull it... I mean surely, it must be stuck now... but it just went on pulling and puckering, perhaps it’ll be one of those nightmare moments when you get a lose thread and pull it only to discover that it unpicks all the stitching leaving you rather drafty!  I’ve left it well alone for now – still it’ll be somewhere to attach the nipple tassels or perhaps in a festive mood, somewhere to hang the Christmas baubles and lights!

22 November 2009 - It's mental too

I was thinking today about other aspects associated with being diagnosed with breast cancer and the indignities that go along with all the physical aspects (tests, poking, prodding, biopsies, blood samples, surgeries, drains, pains and stitching) is what goes on in our heads through our journey.  I've spoken to a few ladies who have been told by medical teams that they have or may have breast cancer.  All of them (including me) said that there were two main thoughts that spring to mind instantly; will I die?; and if I live, will I still look like a woman?

Certainly, in my case, I've asked myself about the first question (‘will I die?’) and pragmatically worked through the 'what if's' associated with that but disregarded it as I'm bugga'd if this is going to beat me! 

 

The second question however keeps playing over and over, 'will I still look like a woman?'.  Probably more accurately for me, will the lack of breast (not so far!) or remaining disfigured reduced breast make me less attractive.  In all honesty I don't know the answer to that and I guess only when I meet someone new or get back in the real world of dating will I know.  At what point do you talk about having had breast surgery due to cancer?  How do you bring it up?  Is there any social etiquette on how/when to do this? 

 

I had thought about what I would do if a mastectomy was the only option and then if I would have reconstruction.  For me, the conclusion was that I wouldn’t have reconstruction, the reason was simply practical - if I had a recurrence how would they find it behind a false implant?  Given the speed at which phyllodes tumours grow it may have grown into the chest wall cavity before being detected – it’s partial to soft breast tissue so wouldn’t grow into the implant.  If I had a reconstruction using tissue from my tummy or thighs, again the phyllodes would grow backwards into the chest wall cavity – which although the tissue is softer would be easier to detect than an implant but nonetheless there is risk associated with it.  With both forms of reconstruction the detection may be slower and I would prefer to have a prosthetic breast or to remove the other breast to even me up than face potentially missing out on any detection of a recurrence.  I also figured that, although I’m never been a tattoo fan, I’d have to have a cool tattoo along or over the scars... perhaps a climbing rose or wisteria... maybe with ‘where’s Wally’ or ‘Gromit’ (finally I could be Wallace & Gromit) in there for a giggle... hey, if I’ve gotta do it, I’m going to make it a bit mental!

 

There is an enormous amount of support and help to get us to and through surgery but once that's all over, we're left with our thoughts.  We don’t just beat cancer, we’re also considering any recurrence and dealing with the after effects of the surgery, anaesthetic and physical scars but in addition we consider what this will do for our femininity and fighting for our rights to have a feminine form.

 

One thing I do know (and this is to you all) is if you are ever in the position of being a partner, lover or friend of someone who is going through or has gone through breast cancer surgery, please remember that the person they are is NOT determined by their breasts!  Take time out to remind them that you still love them or care for them and (if appropriate) that you still find them attractive.  We, breast cancer survivors, have to go through so much physically and mentally that to know that just because we look in the mirror at ourselves and see only the worst, the scarring, the reshaping, the missing, the bruising etc, it's important to know that it doesn't matter to you.

 

Whether the survivor is your mother, your sister, your girlfriend, your lover, we all need to know, to be told, to be touched and to be reminded, not in a checkbox sort of a way but in a caring way that we are, first and foremost, female, feminine and a sexual women... so... once in a while...

 

It’s not just about the cancer... it’s also about how our lives and bodies have changed.

I neglected to tell you something... a friend sent me a link to an article written in The Independent newsletter about one of the journalists' journey with breast cancer and the important role that Facebook took in her 'sanity'.  Independent's article - 18/11/09

 

I've also been prompted that there is a trial being undertaken in the UK (Cancer Research Trial) and I have written for information about how my data/case can be included in this trial.  I am adamant that research is conducted and awareness heightened to this type of rare cancer.  Yes I'm aware that the numbers are small but it's real and it's happening to me (and my fellow phyllodes survivors) and is in our minds every day and if I can do anything to ensure that anyone else diagnosed is able to find answers and that the medical teams who are faced with this are able to advise their patients with honest factual information, therefore whatever I can do to share my data and experience, the better.

 

Another few gems that I've discovered: 

• Clear margins in regards to a phyllodes tumour are a clear 2cm margin - much larger than a normal breast cancer.
• Regular breast cancer travels via the lympthatic system -v- phyllodes travels via the blood vessels.  (question - by carrying out tissue reconstruction could this mean that the phyllodes tumours set up new network of blood vessels for any rogue spindle cells to travel to and metastase)
• The mitotic count is imperative to get from pathology/histology to establish how active the tumour is/was.  The hore active the tumour the higher chance of recurrence.
• Check also whether it had hormone positive receptors.  Some believe that phyllodes are hormone negative but often they turn out to be ER+/PR+.
• Radiation thereapy is generally carried out only once the wounds have healed - radiation can slow down the healing process.

 

Obviously this is only from my enquiries of others and research I have carried out and I'm not medically qualified so should I be accepted on the UK trial, will ask these questions of the medical experts!

 

Oh and the hair is red again... I needed some more colour this morning and I was feeling a little faded!!

 

Oh, oh and one final point for today.. apart from wishing you all a wonderful weekend..  less pain last night so will keep up with the paracetemol for a while longer.  Yippeee!

I'm not sure if the niggling pain is due to the tissue shuffling round or if I have another infection.  Sounds ridiculous having just finished the last lot of strong antibiotics but it's painful and slightly discoloured again.  Hopefully this weekend it'll settle down.  Doesn't help with a good night's sleep though - wish I could just sleep on my back instead of my front... sort of important when you've had boob surgery not to keep turning over!! 

 

Right that's enough whinging and wining... positive mental attitude...

 

I wonder how long it will be until I get the referral appointment with the radiation therapist?  Until then the jobs are to sort out removals from my Mum's house into storage and start the final clear up before the house is sold.  It's strange how different I feel about the house now that Mum's no longer there - it's just a house.  The memories are in the furniture and possession and even the crazy kitchen equipment and those are the things that I'd like to keep.  But I miss her a lot and wish she was here to talk to about this - she would lobby the NHS about ensuring they had the code for Phyllodes Tumours in their records and she'd push for answers, conclusive answers - but she'd also drive me nuts about it all and relate it to her illness and leave long windy answerphone messages! 

 

And then I need to spend some time doing paperwork.  All sounds so very simple but I wish I had the energy to start doing it all.

I had an uncomfortable night's sleep last night and a little pain.  Not sure why but perhaps that I went for a short 40 minute walk with a friend yesterday which just exhausted me.  I will however keep doing that to try to get my fitness levels back and which hopefully also help with my lack of energy. 

 

Now back to next steps... I think I may have stalker tendancies!!  I left voicemail messages for my consultant in a number of different places and also called my Macmillan nurse's number and left a voicemail message there.  But it worked, my nurse called me back this afternoon (whoop whoop, she's back from sickleave) and confirmed that there did seem to have been some confusion about what's going to happen next.  I am being referred for radiationtherapy.  As you will know if you've read my story so far, it's 50:50 as to if radiationtherapy will reduce recurrence so the final decision will be with my radiationtherapist but I'm grateful for the chance to speak with them and give them copies of the medical papers that I've found about Phyllodes Tumours and radiation therapy. 

 

She also settled my mind about the follow up appointments in the next two years and confirmed that I would be seen by my consultant every six months in the next two years.  My next appointment is in two months time to discuss any concerns following this latest two surgeries.  But that I would only receive an annual mammogram and if any other tests are required in the interim then they would weigh up the radiation risks associated with mammogram -v- ultrasound or MRI.

 

She is also posting a copy of the histology report from the second surgery for my records (and for future reference, should this be required).

 

I feel soooo much better having had a conversation with my nurse and assured that they are looking after me and considered not only the DCIS and the phyllodes tumour - I will sleep well tonight.

Having read more about phyllodes tumours, the outcome and prognosis, available surgeries and recommended procedures but importantly for me at this point, the possibility of recurrence.

 

The reports that I have read and the stories of survivors is that if this type of tumour does recur it is more aggressive in the recurrence and that there are a lot of recurrences.  Recurrence can also be within a few months of a complete excision with clear margins.  You see that’s the important bit, a complete excision AND clear margins as the first step and, as I said before, some experts recommend adjuvant radiationtherapy after the excision to reduce the risk of recurrence.  The rough statistics are that this may reduce recurrence by 20% which doesn’t sound very much and has to be weighed up with the risks associated with radiationtherapy but I’ve done this and, although I would like to discuss it in more detail with a radiation expert, I believe I’ll take whatever I can get at the moment to increase the odds!

The problem is that as I’ve said before there is little information or research available about phyllodes tumours.  In the US they estimate that there are no more than 500 cases per annum which if the population is 304,059.724, is such tiny numbers... you work out the stats!  In the UK there aren’t any numbers as phyllodes tumours aren’t even coded in the NHS system so you’d be unable to search against the database and find numbers or indeed cases to which to refer!  So I do understand that there is limited information and that the limited resources and research allowances in our medical fields are spent on the more common diseases and illnesses.

Why do I need to tell you all this again, my phone call yesterday from the hospital left me confused and concerned.  My usual nurse is off sick and the call came through from another nurse who said that they had had their group meeting to discuss the DCIS.  They were happy that they had clear margins on this (I asked how much and she confirmed millimetres – it must be much smaller margins required for a DCIS than a phyllodes tumour, but perhaps a DCIS doesn’t have the tenticles).  She then went on to say that they had decided that there would be no further surgery or treatment required and that an annual mammogram.  This totally contradicts the advice received last Friday relating to the phyllodes tumour aspect, in that I was to be referred for radiationtherapy and that I would be checked every 6 months in the first 2 years to keep an eye on recurrence.  The nurse who called was somewhat surprised when I said that she had only mentioned the DCIS and not the phyllodes tumour and questions why the follow up and radiation had changed.  She then referred to this being the decision of the consultant present, who wasn’t my consultant.  I asked if my consultant had been present at the meeting and she advised that he had been there for some of the meeting.  I therefore asked her to double check this was correct and that the discussion they had related not only to the DCIS (which I wasn’t in the slightest bit concerned about in any event) but also the phyllodes tumour.  She is going to call me back.  I got the feeling that they’d closed my case and perhaps hadn’t considered it all in the group discussion.

I’m left feeling so confused and worried that unless I do everything within my power to ensure that measures are taken to reduce any risk of recurrence, I may well be undertaking further surgery within a year!

I also have been wondering further about the ‘clear margins’ obtained for the phyllodes tumour.  If histology on the original excision indicated that there were lesions up to the margin of the 10.5cm and 2.5cm tumours; the cavity was reconstructed using other breast tissue; then the second operation would have (in order to obtain clear margins) have had to remove 12.5cm cavity (including the refilled area) in order to obtain a clear cm around the original cavity section.  I know that I’ve got more than a fair share of breasts but I think I’d notice if that much had been taken!  I’ve come to terms with my lopsidedness and decided that only in particularly intimate or bikini moments, would anyone notice the difference – the joy of padding and chicken fillets!

I’m still waiting for the hospital to call back again but am determined to have an informed discussion with my consultant about managing this best so as to ensure that I don’t have to go back into surgery shortly nor is any follow-up  ignored and more drastic surgery required.  I have tracked down an additional report  by Dr Richard Pezner, a radiation oncologist in California that recommends radiation therapy and surgery to prevent recurrence.  His report also indicates that for tumours  at least 10cm in size should be managed by a mastectomy, which is not what I have had, and therefore I believe that radiationtherapy would be even more important to reduce the risk of recurrence. 

In addition to this new report, I have the Barth White Paper and the European Society of Therapeutic and Oncology report as mentioned below.  I have also contacted someone at Cancer Research, who was conducting some research in the UK in 2004 and also a phyllodes specialist in Australia for further advice. 

It does seem odd to be pushing for a treatment that has got side affects that I’d rather live without and that by having radiationtherapy isn’t a guarantee that it will not recur but a small insurance policy that perhaps offers 20% of hope.  However I think that’s sort of the point... I want to live and I’m fighting for the ability to do so without the constant fear of recurrence. 

A relatively sleepless night last night whilst I await, once again, news from the hospital about what next...  I can't help but giggle at the fact that this period of my life feels like forever but actually only started with my first medical appointment less than three months ago - WOW!

 

Enough for now...  fingers and toes crossed please.

 

Have checked my phone is working a squillion times and checked the time more often.  I was thinking how daft it is that I'm so nervous until I remember that me and the results so far haven't been great.  First results meeting, they announced that it wasn't a benign fibroadenoma but a malignant phyllodes tumour and the second results meeting, they announced that they had found a DCIS... call me old-fashioned but....

My younger brother and his daughter stayed over last night before returning to Glasgow today,  I was able to have a lie-in this morning and then spend a few hours colouring in picturebooks and painting (in random colours) Iola's fingernails and toenails.  All such normal and everyday things.  After dropping them at the station at lunchtime I nipped (or that's what I would previously have done) into the supermarket to pick up a few groceries.  I am constantly surprised at how tired I get and was reminded of this in about aisle 6 when I felt sick with tiredness wanting to curl up and have a nap... not terribly practical! 

 

It's lovely being back home, but aware that the simplest of tasks sometimes feels like a little mountain to climb!  I am however aware that I've got to take each day as it comes and start doing a little bit more every day.  I wonder if this fatigue is from having two general anaesthetics so close together... or two surgeries... or maybe both... or maybe constantly wondering and worrying about what's going to happen next!? 

 

Tomorrow's another milestone in my diary and I can't help but wonder what they will decide at the group meeting in hospital and indeed what they will tell me - only one sleep to go..

Whilst I wait for Tuesday to arrive, I thought I should use today's entry to remind or tell anyone who has come across this site in a search for answers or support relating to their own (or someone they know's) diagnosis of phyllodes tumours.  As all of you will know who have read this diary or been with me through this journey, this is why I wrote this site - my own frustration at not being able to find information and more importantly feeling alone in my diagnosis.  I have learnt that there are others diagnosed with with phyllodes tumours and like me, they're survivors.  There remains little medical information on our unique and special type of rare cancer but that it's not an impossible search - there IS information out there and there are people (very special people) who you can ask.  Often the questions I wanted to ask or needed to know the answers for were ones that surrounded my anxiety more than a medical response or just simply needed someone who knew to hold my hand on that part of the journey and tell me 'it'll be OK'.  I am incredibly lucky and thankful for the band of phyllodes sisters who have supported me, answered questions or whoop whooped sufficiently to make me believe I can beat it - with a giggle and laugh too.  We also have all, through our own journey, found resources, papers, websites, doctors, oncologists or each other to answer questions.  Please don't struggle on your own.  Reach out and we'll catch you.

 

My first breakthough was registering with Rare Cancer Support Alliance and introducing myself on the Phyllodes forum and quickly receiving responses.  I also read though different discussion threads and then researched links to other papers or where another hospital is mentioned looking through their website for information.  From the support alliance site, I found Trish's blog and contacted her.  She then invited me to 'friend' her within Facebook.  I then discovered that Facebook (which most of consider a bit of fun or somewhere to a timewaster) can also be a powerful tool and link.  There are some groups which I've joined "Phyllodes Support Group" and "Phyllodes Tumors, CystoSarcoma Phyllodes, whatever the hell it's called" and "Rare Cancer & Tumors" - all of these groups are supported by a number of Phyllodes survivors who in turn are able to share support and information with each other and regularly chip in on my wall or status to give me a nudge of support or laugh at find humour in our shared experiences. 

 

What I really discovered was simply that I wasn't alone.  Being diagnosed with phyllodes tumour is rare but not unique.  There is no hard and fast rule about phyllodes tumours nor how to treat it because there are no reliable studies or research on it - mainly because the numbers of us are so small but by talking to others we can help make the right decisions for us, when the time comes, and importantly without a knee-jerk reaction to the unknown.  The questions I wanted answering had one by one (mostly) been asked before and they, my fellow survivors, could help me answer it or help me find my answer.  I shall not deny that I wish there was a medical casebook to which we could refer with our 'what if' and 'what next' questions and simply turn to the right page for the answer.. but there isn't... or at least there isn't yet!  Perhaps together we can provide some more statistics, some more results, some more facts and THEN maybe there will be more research and studies performed so that what we have won't be so rare...  In the meantime remember no matter what you're not alone, you just have to ask.  ♥♥♥

 

I had lunch with my big brother and his family.  My youngest brother is visiting from Glasgow and my Dad and stepmother were also there.  A really lovely meal with family chatting about life, Mum's death and my illness but mainly just being together.  After lunch I (as well as my neice) had to have a nap and then headed home after being beaten at backgammon!  My little brother and Iola (one of my neices) came back with me, which was a relief as my bro was able to help unpack all my bags and ready my house for my return - I've not been home for 10 days or so!

3 more sleeps until I hope to hear from the hospital following their group meeting and receipt of the full histology report.  It's funny (and boy have I had to find a funny bone or two through this journey) that once again I'm waiting for results or news.  I keep running through the last meeting with my consultant where he started the conversation with 'I don't believe you need any more surgery, at this time' and went to to discuss considering mastectomies ?!?  Millie and I exchanged confused expressions and listened intently to him then telling us that they had found this ickle DCIS (albeit low grade) and outlined what the course of action would be/have been, if they had found it on its own merit rather than as an aside to my phyllodes tumour.  It wasn't until we got home and researched further what a DCIS was and how it is treated (and whoopi-do there is information on this on normal C websites!) that the conversation and the necessity to discuss mastectomies fell into place.  I was however assured by his comment that he believes I don't need any further surgery at the moment.  The very thought of going through it all again fills me with dread - I've done it twice and want to get off this fair ride!

 

But as ridiculous as it sounds, whilst I'm hanging on to the positives (that they believe they have the entire phyllodes tumour and got a clear margin), there's that nagging in my mind about the DCIS, if they got it all and what this really means.  You see if they had found that on its own, MOST people would have surgery to remove it and a clear margin to ensure that it didn't turn nasty.  However my thinking is that I've had enough and am going to be closely monitored over the next couple of years so that IF it should turn nasty they will know about it before it takes hold... but is that just me trying to avoid more surgery.  Is that what they will recommend when they get the full histology report back and the professionals have seen all the medical info?  I don't know.

 

There's also the question of to radiate or not to radiate.  As I said earlier there are two schools of thought as to if radiation therapy will reduce the risk of recurrence of a phyllodes tumour.  For obvious reasons I want to reduce the risk of recurrence by as much as possible however there are risks to having radiationtherapy in itself.  Would radiationtherapy assist with nuking the DCIS also or might it irritate it, if its not been totally removed?  My mind's a-whirling when I should be celebrating that they say they've got the phyllodes tumour, but I can't quite yet, or not all the time.

 

I also know, sensibly, that my team at the hospital will give me the best possible advice on more surgery or future surgery and that when I have my appointment with the radiation oncologist they will also be able to advise on the risks involved so that I can weigh it up but I can't help but wonder when it will all be over...

I'm not sure which of you said, "it sounds like you're out of the woods but there's still a few saplings to go" - I think you're probably spot on.  I would love to be able to sleep easy knowing that the full histology report is in and that the medical discussions on Tuesday had taken place.  It's odd to think that I've been given the good news about the phyllodes tumour and margins having been obtained but that there's still discussion about possible surgery, treatment and prognosis particularly due to the additional DCIS discovered.  I am however glad that because of the DCIS yet more medical people will become aware of phyllodes tumours.  I'm also glad that I have been treated in a teaching hospital that is also part of the Royal Marsden which again, I'm hopeful, will mean that there may be future doctors aware of phyllodes tumours and perhaps intrigued enough to research them more.

 

For me - it seems Tuesday afternoon is a very long way away.  This is when I should hear from my nurse following their group meeting.  She will either advise me on the phone of the conclusions made at that meeting or to call me in (if need be) to discuss further with my consultant.  I'm also awaiting Sutton hospital's call setting up an initial appointment about radiationtherapy, planning how much for how long etc. 

 

I feel as if I should be celebrating but a little cheated at not really knowing if I'm clear of it all or what can be done to minimise any recurrence in the next few years.  There have been a number of ladies I have met through this journey that have had recurrences which has meant further surgery or treatment, some within the first few years and others some 7 or more years later.  As the phyllodes tumour that I had was malignant (they can be benign, partial malignant or malignant) there is, of course, a greater chance of it coming back.  I know, and you often read that cancer survivors (of any cancer) are always aware that it may come back or that nodules have metastased elsewhere in the body - I guess I always will be looking out for signs.

 

Today I'm going out... and not to the hospital!  Whoohooo, Millie and her sister are taking me for a brief trip shopping and lunch.  Let's hope that being upright and wandering around the shops won't be too uncomfortable as the stitches are still healing and the tissue still bruised and repositioning.  Hmmm shopping and lunch - that sounds like a normal thing to do... I love it!

 

PM - Ok so shopping may have been a bit adventurous yet.  Lasted about 30 minutes before lunch and a sit down  Then about another 30 minutes of wandering and browsing before I apparently looked rather pale and interesting and was chauffeured home for a snooze.   But at least I left the house and no one asked to look at or prod my boob!   

Today should be dedicated to you.. all of you who have supported me and held my hand or given me a hug (virtually or in person) through my journey so far.  Lest I not forget that you have all played your part in keeping me sane (or as sane I could possibly be) and looking for the positive in everything... THANK YOU!

 

I have received such wonderful messages, texts, emails, facebook postings, telephone calls, linkedin messages and through this site with notes of support.  Nigel getting up at ridiculous o'clock to take me to the hospital for each operation.  Millie and her family for providing me with a recuperation home, chauffeur for appointments and family to play rummikub with to occupy my mind.  My own family who have supported me and my brothers who have looked after Mum's affairs when I haven't been able to help.  I've also felt the love, energy and positive vibes coming at me from all angles around the world.  I've also been lucky enough to receive flowers, cards and gifts (those of you who have been able to track my physical location down!).  I loved receiving a Percy Pig hamper (those of you who've known me from my Pig Pen days appreciate my obsession) and today a gift which made me cry with the thought and love put into it's giving.  I was told to wait by the door for the postie to arrive.  I did and the postie had bought me a parcel...  Upon opening the box, I found another box.  Upon opening that box, I found yet another box.  And then attached to a digital photo frame a post-it note which said "Plug in... Switch On... Enjoy! xxx love you!! xxx" and then started with the first frame "We Anna" and then lots and lots of photos of me and my beautiful friends doing fun, daft stuff together... Thank you, thank you, thank you Toby, Vix, Kev, Heleen, Nigel, Marney, Ian, Jess, Rob, Hannah, Darren, Maria and, of course, Christin, Oscar and Dexter too.  I'll be back soon guys and there'll be heaps more crazy shots to take, I promise. 

 

I am incredibly thankful for you all. 

Antibiotics have done their stuff and the infection has nearly all gone (evil side affects though!)   Leaving shortly to get through the roadworks to the hospital in good time for our appointment at 2pm with the consultant.  I'm feeling quite positive about it though (which is good) as, apart from the blip with the infection, I felt good straight after the last excision and have had no more shooting pains since.  I don't know but my money would be on the blighter having growing pains.

 

Fingers crossed and I'll update you later...  Put that champagne on ice.

 

Update - We've seen the consultant and I'm finally out of detention(ish).  He confirmed that he was happy that he had now removed the entire phyllodes tumour AND got a sufficient CLEAR margin.  He's referring me to the radiationtherapy unit who are based at a different hospital to talk about available follow up treatment. 

 

There are two very different schools of thought about the necessity of this additional treatment - essentially because there isn't enough data to be examined or clinical trials run upon which to rely!  However I have taken the time to review a lot of medical journals and articles (as I am sure he and the team have) particularly the following reports from which I have extracted part of their 'conclusions'.  The report written by Richard J Barth in the Annals of Surgical Oncology (2009) 16:2288-2294 - "Margin-negative resection combined with adjuvant radiotherapy is very effective therapy for local control of borderline and malignant phyllodes tumors.  The local recurrence rate with adjuvant radiotherapy was significantly less than that observed in reported patients treated with margin-negative resection alone." and the European Society of Therapeutic and Oncology October 2004 - "While benign tumors have a good prognosis after surgery alone, adjuvant RT is recommended in the management of malignant and borderline tumors."

 

Given the above reports (together with other reports I have seen) I am hoping that the radiationtherapy will be given - sounds totally weird to say 'hoping' but I really don't want to do this all again and have more Thursday surgery!  I've pretty much worked my way through the hospital's thursday evening meals and not sure my tum can cope with a repeat of any of them!

 

BUT (and there had to be one, well actually two BUTS to the above good news)... the full histology report isn't yet back.  The reason this is important is two-fold.  Firstly that I can be totally happy that they really have got the whole phyllodes tumour and any ickle sneaky tenticles too (although they seem confident of this with the part report they have).  Secondly, they discovered a really incy wincy (my words not the consultants), pre-cancerous DCIS.  The consultant made the valid point that in recent years there have been lots more of these DCIS' found but they believe this to be due to the new technology rather than an increase in them existing.  He also said that had we not had to just go through everything with my phyllodes tumour, I might never have known nor needed to know as it could exist without ever turning invasive, but that there's always a risk.  Explanation as to what a DCIS is - Macmillan - DCIS.  Yes they did laugh at me once again being individual and different ie having both types - I like to think of it as being 'unique'!

 

The team, consultant, Macmillan nurses, oncologists etc etc are going to have a group discussion at their weekly meeting about me, my phyllodes tumour, possible chance of recurrence and in addition the DCIS on Tuesday following which they will call me to discuss further options.  They will prior to this meeting have the full histology report.  I however am, at this moment in time, quite calm about it and happy that I might never have known about it and that radiationtherapy may well nuke it at the same time, or indeed that they managed to cut out the whole DCIS with the phyllodes tumour and have obtained a clean margin on that as well.  Here's hoping.

 

I'm also so very impressed with the honest approach that I received from the consultant and my Macmillan nurse and reassured that they are offering me the best possible advice and treatment but also allowing me to make informed choices about any next steps, be that more surgery or alternative treatments.  I also feel comforted that they will keep a very close surveillance on me over the next few years (in two months time and then every 6 months with MRIs, mammograms and ultrasounds) and then just annually, should nothing recur.  I have been incredibly lucky with the team that have been looking after me and intensely grateful for that assurance.

 

I'm very much looking forward a glass of champers to celebrate the good news that I got today... join me?

 

PS friends/family  I've not told Dad the last bit of this but only that they're happy that they've got the phyllodes tumour and I will have radiationtherapy... just in case you're in touch, please don't tell him - he doesn't need to worry any more!

Brief update today as it hurts not to be curled up in a ball on my side... the lovely side affects of the antibiotics so have been kept awake by cramps and raging hot flushes all night - mmmm nice!  However the infection does seem to be disappating slightly (at midday) so they seem to be doing what they're meant to do.

 

Tomorrow I get to go back to the hospital for the test results of the lump - hopefully will be saying they have got it all and clear margins and we can then work out what treatments required to reduce any recurrence.  They can also have a look at the infection!

I've been so hugely positive about Op No. 2 and felt great afterwards.  All the shooting pains have gone away which makes me believe that they managed to remove the tumour and all the tentacle things.  The infection is really red, angy and sore and although it doesn't appear to have spread further is making me feel really ill.  I'm waiting on instruction from my nurse as to what to do - presume antibiotics but hoping that just because the infection is from an op in hospital, I won't need them via IV in hospital.  It's a nice place and all that but I really really don't want to spend any more nights there!  Feeling down and miz today.

 

Nurse advised referral to local GP asap.  The lovely Millie took me to her GP and after GP inspection which went 'Wow, that's hot...' (a phrase that I like when people inspect my boob) but then went on to add '... - you need antibiotics' (not a phrase I like to hear!), I am now the proud owner of some very fetching blue capsules - whoohoo I didn't have blue in my arsenal of daily drugs!  You'll be pleased to know that this GP had never heard of a malignant phyllodes tumour either!  We, my phyllodes sisters, are quite a special bunch of ladies!

 

Am truly not in a good place today, feel low, ouchy and generally pissed off that when I really thought that I was doing so well I just have to get an infection.  Still tomorrow's another day - see/speak/blog you then.

Not such a great night's sleep for no reason as I was feeling so well.  It appears that I have an infection as there is a red, hot patch... blitzing it with drugs and if no better tomorrow, perhaps a visit to get some antibiotics.  Bit sore and uncomfortable today... bugga!

 

I found another lady searching for information about this special type of tumour and the follow-up treatments available.  She mentioned a report that has been done in Denmark and I'm hoping to get a copy.  Although, as always, this may not be a proper clinical research due to the sample numbers being so low, it would be fantastic to have further medical info to reference.

 

Hmm infection definately there and slightly increased in size since this am.  Have left message at hospital as to what to do... just hope that if infection picked up in hospital they won't want my company for a few days with IV antibiotics.  :-(

 

Thanks Leon who finally had to make that old joke from Viz magazine... (was wondering who would be first!)... "I feel like a right tit".  And thank heavens I still do :-)

I woke up early this morning with feeling amazingly chipper.  I think I'm either getting used to general anaesthetics or all the positive energy, support, prayers and love you all sent me worked - hey they should prescribe it all on the NHS.    If you could muster them again when I get my results at 2pm on Wednesday please!

 

Am excited about the new 'icklier' me, finally when they say in pilates classes, stand with your feet shoulder distance apart, I can see what they're talking about!  OK so possible downsides to icklier boob - Jane will win the annual breast size contest when Mick's in the UK and there will be less available for head resting after too many in the Opera Bar, Sydney but we'll make it through!  :-)  Oh and I can start back at pilates classes... I haven't been for months now and really missed it.

 

I can't believe how much better I feel this time round.  Millie keeps asking if I really have had an operation at all as I'm up and about.  We even got to take Abi to gym classes and out for a coffee.  Not sure I could cope with driving through and those pesky seatbelts.

 

Wouldn't it be wonderful if they had managed to get it all out and totally clear margins?  4 more sleeps and I will know.

After an anxious morning on the ward waiting for the endless visits from anaesthetics, consultants, nurses, breast cancer care team, physiotherapists and generally anyone else in the medical teams... or so it felt, I finally got discharged into Millie's care by 1pm.

 

My first task when I got home was a quick wallow in a shallow bath to wash away the hospital.  A little shockingly I caught a glimpse of my reshaped self in the mirror.  Now I understand why the breast care nurse talked about the possibility of an operation in 3-6 months when 'things have settled down' to 'even things up'.  Don't misunderstand, I'm incredibly grateful that I still have a breast but was still a little shocked - I'm not sure any amount of mental preparation really works..

 

Next appointment on Wednesday 11/11/09 which I'm hopeful will confirm that we have clear margins and there's no need for further removal.  In addition, future treatment/tests to discuss and schedule in.  I'm hoping (although it sounds weird to say 'hoping') that I can have radiotherapy and a lung scan.  Radiotherapy, it appears from the little clinical information available, may reduce the risk of reoccurence - which even if it reduces it by 1% has got to be worth it. 

Nigel collected me at 6.15am following a sleepless night and delivered me to the hospital in good time by 7am.  He didn't however leave me at the main entrance this time, insisting that he stay with me for as long as possible - so I didn't escape out of the back door or locate the fire escape!  Everything seemed so quick, visits from anaethesist, consultant, trainee doctors etc etc and before long I'm in the operating theatre having the canula inserted.  As per, I didn't even get to count to 1 before I'm being woken up in the recovery room and back on the ward for elevenses.  Although I didn't know what they had done, I did have a drain which meant that I knew there was a cavity - a tube is attached to ensure that blood and fluid that might build up in the cavity is drained away.  Ironically when I was for Op 1, I had been very smug about the fact that I hadn't had a drain - serves me right this time round!

 

I managed to get a few hours sleep during the day which I was so very grateful as I had an incredibly uncomfortable night.  My drain was pulling on my wound and didn't feel right at all, I had sharp pains in both breasts throughout the night and to add insult to injury ended up having an ultrasound at 1am as my tummy was bloated and a catheter finally being successfully inserted at 3am.  Not a great night and made slightly more anxious about whether I was going to be discharged tomorrow or need to spend a further night in hospital.

 

We were however in a prime spot for the fireworks and yours truly had a window-side bed, so a perfect view over London for Guy Fawkes night - at least a little compensation.

 

I truly hope this is the end of it and I don't have to go through another operation... let's hope the removed tissue shows clear margins.

So much for prescription sleeping pills.. wide awake nice and early but it's a gloriously autumnal day so shouldn't grumble too much.  I just love it when the autumn colours are lit beautifully by sunshine and the air is cold and crisp.

 

I 'published' this site last night and told friends and family of its existence.  I've received such wonderful messages of support for the upcoming operation, enormous support for doing this site and acknowledgement about my honesty and openness in the content.  Thank you.  Sadly I've also learnt of friends around the world (who like me have been quiet and off the radar for a while) and who have been through or are going through treatment for breast and other cancers.  We're all amazingly strong people and I'm sending my love and support to them also.  Right, now to work out what to pack for hospital and convalescence.

 

11.30am - The hospital have just called to say 'be prompt, they want me to be first on the surgery list'... is that a good thing?  Think the consultant starts ops at 9am, so good thoughts and well vibes then please...

 

Am now installed at Millies, room looking georgous and comfortable (better than any 5* hotel!) and 12 hours to go until I leave for the hospital. 

 

Will leave you now and update you when I'm back home - Facebookers, I'll update you there via my mobile.  Gosh though I am soooo lucky to have such great support - if I could cash in all the fantastic messages, and bottle all the good vibes and energy, I would be the richest person alive.  Thank you.  xxx 

All stations go today.  I wanted to get my house clean and tidy (whoops even found the duster), the fridge cleared out, washing and ironing done, bills paid up to date etc etc so that when I come home after my next operation, I don't have to do anything.  

 

Hmm but as the first thing of the day was making a cup of coffee (not such a difficult task me thinks), but I put the kettle on, coffee in the cup, poured the water in, added the milk (the final bit from the fridge), stirred it all up and put it to my lips following which I realised that it was cold... oops I neglected to notice that the kettle was cold and the water wasn't steaming!   Doh!

 

Still jobs to do and lunch with my Dad and his wife.  We had a lovely lunch and both of them were very sympathetic but I'm always anxious about worrying Dad with what's going on.  I've noticed that when he gets anxious he gets more forgetful and slower - I don't want to cause him anymore anguish.  Love him and love his hugs.

 

Jobs done, fire lit, settling down to a bit of TV and an early night.  I'm watching How to Look Good Naked on Channel 4 TV at the moment.  The subject of the show is someone who has had a mastectomy following breast cancer.  All her insecurities I can understand as I think I've thought them but need to resolve them, as I'm sure she will with the help of Gok Wan and no doubt many many others.   

 

Gosh one of the things I truly miss with all this, is a huge great big hug.  But as it hurts when anyone is near my breast and certainly couldn't cope with being squished I can't ask for one.  And people are so (sweetly) cautious of me I don't get so many offered.  Sounds daft but there's nothing quite like a good comforting hug and I can't have one!

 

2 more sleeps to go and I'm aware that I'm getting more and more anxious.... think my heart rate is going through the roof... bring on the pre-meds!

3 November 2009 – Email to friends and family –  “Me...”

“Hello All.

 

Some of you may know, others may have heard rumours about me, why I keep cancelling meet ups, am not in work etc etc, I've put a little story online.... I'm also hoping this will help others find answers or reach people to talk to that are affected this rare cancer, malignant phyllodes tumour. 

 

www.annawallace.co.uk

 

Look forward to being out partying soon... keep sending through the invites please!

 

Keep well and safe

 

Anna

Xxx”

I woke this morning and noticed that my pillow was wet.  I'd obviously been crying in my sleep again.  It's a toughy at the moment, trying hard to look on the positive side in that they WILL get the tumour and a clear margin and I'll then be fine (subject to post op radiation therapy and regular tests).  Although I am incredibly fortunate to be able to see the positive in almost every situation and have a giggle at myself when I get upset, I'm struggling with this as the operation looms and more, of the same, questions are rerunning in my head.  Should I just elect for a mastectomy to maximise the chances of it's clean removal?  If so, would I have reconstruction surgery?  Could I cope without a boobie?  If I didn't have it reconstructed would I (should I) remove the other one too again reducing the chances of it coming back in the other breast.  But I'm still young (ish - I'm 41 going on 4!) and my boobies are important to me... I'd need a whole new wardrobe (which I can't afford)... I love my lingerie... I'd look so very different... and I'm single... could I find someone to love me who'd want to see me naked?... BUT then again there's heaps that I could do without boobies that I haven't been able to do with them... like going running (they were always sooo painful when I ran or did aerobics type classes), even Pilates when I needed to lie on my front was painful... But then again, would I still feel feminine without one or both of them?  OK, so today you're really getting my inner 'mares on this one.  Gotta be positive.  The next op will be the end of it and they'll get it all.  I don't need to worry about being lopsided.

 

Right best get up and do some cleaning.  Some of my colleagues are coming over to see me for lunch.   Hmmmm will they bring Percy Pigs with them?

 

Lovely to catch up with my colleagues for lunch but am now exhausted again.. a little nap me thinks. 

Slow start this morning.  Am exhausted as mind is whirring again.  Think I spent most of the night thinking and rethinking and just in case I hadn't already thought it out, thinking some more - sleep evades me!

 

A friend called me from Australia to find out how I was.  She has been investigating and searching for information about Malignant Phyllodes Tumours.  Luckily as she works for a publishing company she is able to access medical books that aren't available to the general public and has found some indepth details.  But still no definate reports or clinical trials that would ensure a complete structure to my treatment. 

 

We also discussed the Scar Project (www.scarproject.org) and the images of stunningly beautiful women who have had mastectomies.  She believes (as I do) that this sort of project should be properly printed and distributed to get more acceptance of something that is happening to so many people.  Fingers crossed the publisher she works for will take this seriously!

 

I have thought so much about how I feel about a mastectomy.  I don't know at this point if I will need this but I'm trying desperately to think all these things through as so many of the people I've contacted say that it helps so much to be mentally prepared.  I'm so scared and frightened by this though but not sure if it's because of my own vanity.  As a single girl, I'm not over meeting new people and having relationships but think that many men would be totally put off by a mastectomy... but then again if they are, they aren't good enough for me.  I deserve someone who will love me whatever I look like.  (If only I could believe that 24/7!)

Shattered this morning but had to wake early to get to the Doctors Surgery for a swine flu injection.  Whooohooo with everything else that is going on, I now qualify in the 'high-risk' category for a free jab.  Although the doctor mentioned that she was confused why I was at risk until I mentioned that it was a malignant phyllodes tumour.  She looked closer at the NHS notes and commented that it was added as a benign tumour as there was no NHS code for a malignant phyllodes tumour.  How on earth is this going to help any research or statistics regarding this type of tumour in the UK if there's no way of searching for it?  My doctor has said that she's going to try to get the code added to the NHS database.

 

Although as a treat after the jab I'm off to see my friend H and her family for the day.  It's been ages since we met up as it's been difficult with my not being well and able to drive and her having two adorable small children that don't understand about illness - and whom I just LOVE having cuddles with but can't at the moment.  It's heartbreaking that little Alex (aged 2.5) and I can't have our ickle and huge huggles.

 

Tired and in pain in the afternoon, those stabbing pains are back.  Long drive home. 

I'm exhausted and my boobie is painful again but I need to do my bit at Mum's house with some final sorting.  All of a sudden I'm very conscious that there's so much to do and organise and I can't leave it to my brothers to do.  They've both got their own businesses and young families not to mention that of course their boys, which means they're less sentimental about the bits and bobs and pieces of paper.  My fear is that I'll come out from all of this and discover that the stupid little things that made up my Mum (God knows she was great at giving us odd presents) would be gone, along with all those little memories... the big stuff is always there but the little stuff is harder.

 

I managed to sort out a lot of things and pack up some pictures to sort later when I'm well again.  But the thought of unpacking them all when I got home was just too much and I was wincing with pain on the way home and then getting cross with myself for doing so.  Luckily a colleague had texted me to offer help and I took him up on his offer.  He bought some other boys with him and they helped unload the pictures.  There didn't seem that much and I did feel a little silly asking them but was at the bottom of my energy fields by the end of the day.

 

I do feel better having 'done my bit' with Mum's house and possessions and I hope that my brothers think I've done the right thing.  I can't help but every now and then think however that I'm not sure why I'm trying to save my memories of Mum in possessions  when perhaps I'll never actually have the chance to have these things around me... It would be ironic if I'd fought with my brothers over something silly and won, only for them to have to divide up my possessions soon.    Ooops I've gotta think positively so that's all rubbish... but it is what I'm thinking when I'm low!

Today I realised (although I've worked and used the internet for 20 years) how it really can be an invaluable tool for research and support at times like this. 

 

I hope and pray you'll never need to use it in the same way that I have.  Faced with virtually no information available to me via the hospital, nurse or on the UK cancer sites, I had to google different questions to get a good cross-section of information and to be able to sieve out the unnecessary information, to learn how to not always read the worst case scenario and more importantly find as much validated medical information about my longterm health.

 

Trish posted a message on her Facebook wall which just goes to prove that there are angels alive and amongst us:

...ATTN: My fellow phyllodes friends - request Anna Wallace on my friends list,she's brand new and recently diagnosed with a malignant phyllodes tumor and needs our support! Let's show her how beating breast cancer is done! WONDER TWIN POWERS ACTIVATE!

I now have quite a few friends who understand what I'm going through and understand the daft insecurities and concerns, the frustration at not being able to easily get information about this type type of tumour, about why post-operative bras have to be quite so hideous (why can't underwear manufacturers realise that we (and there's quite a few of us) would buy buy buy something practical and sexy - we're still women who want to be feminine!!).

 

I can't stress enough how fantastic it has been to have friends who are going through a similar experience to exchange thoughts with and to ask questions of.

I'm incredibly lucky in that I've got such good friends in Millie and her family.  They offered and I accepted, to come down to Mum's house and help with the packing and carrying.  We got loads done - I'm always surpised how long it takes to pack up china and ickle bits.  But what a joy to have such happy helpers and the children were just the most useful and caring too.  It was just so much fun doing the task and playing Racing Demon card game in the evening.  As always it's also been fantastic having someone who knows me so well (we've known each other since 1986) and who has been such a support and researched lots on the internet and understands my head!  Thank you Millie.

There's a post on the forum answering my question about the sharp stabbing pain.

"I think the pain is probably caused by the op but I have had a couple of bouts of fat necrosis which can be caused by trauma to the breast either in something like a car accident or as in my case with lots of surgery and I have to tell you, you certainly know when you feel that." 

I also received a response from Trisha;

"I got these pains after my 2nd surgery. It's called "mondor's disease" which is a fancy way of saying I had a blood clot in my breast. The clot was occluding bloodflow to various veins in my breast which is what led to the hardened "strands" throughout my breast and ribs. After meds for 2 weeks the strands are getting softer and pain is getting much better. I was only on anti-inflammatories and that's the only treatment. It may take as long as 6 months for the strands to completely soften up. These veins arent going anywhere too important so the chance of the blood clot breaking free and getting into my heart or lungs or brain is not as issue. Easy fix!"

I'd never heard of Mondor's Disease and have now done some more research on it.  I'm not sure if the pain I have is either of the above or more intensified version of the pain I was getting before treatment.  BUT just to know I'm not alone and that it will pass has helped enormously.

 

I received a further email through the forum from Trish which gave me the most enormous support:

"I'm so sorry you're going through this right now. I used this site to get me through and you will do the same. That's why we're here! I've even met a couple of friends on here and have met in person. We phyllodes friends have this special little bond, and I'm sorry you've found us, but welcome to the family!"

Trish also asked me if I was registered on facebook.  I 'friended' her.

 

AND I didn't cry today.  This is the first day that I haven't cried since Mum died.  Yippeee

Desperate to find some answers I resort once again to the internet and start searching through the forums on the Rare Cancer Support Alliance website.  After a few hours reading postings and also searching other sites, I find a posting from Trisha in Vegas that sounds similar and a link to her blog.  On Trisha's blog I find the below text and email her through the site:

""I celebrated the VERY first day of awareness month with a visit to my doctor. I kept getting these insane tearing/ripping pains just below my surgical breast on down to my ribs. Sometimes for no reason but usually with movement these horrible pains would strike. The other day I attempted to pull my shirt over my head and HOLY SMOKES!! Out of reaction I grabbed my breast and rib area and felt the craziest things. If you were to run your finger from the middle of my chest just below my breast and out towards my armpit, it would feel like you were strumming a guitar. Underneath my skin were these very thick, hard, ropey strands that ran up and down my ribs. Some even extended as far as down to my waist. Freaked me out. My doctor felt these strings, smiled, and said to me "Boy it's always a pleasure to see you!""

Whoohoooo, finally, I have discovered the Rare Cancer Support Alliance (www.rare-cancer.org) which not only lists details about a malignant phyllodes tumour but has forums where other ladies have posted and answered queries, given their stories about their journey, what worked, what didn't work, what they were advised, shared their histopathology reports etc etc. 

 

I posted an introduction to me and my predicament whilst also looking through the various postings and forums for other information.  I also researched previous postings where I note that there are some posts that refer to similar pain being due to surgery and the nerve endings settling down.

 

I can't explain how relieved I am to have found somewhere that has honest information and balanced views about this type of tumour. 

 

I also found reference to a Barth report that's been recently published... Barth Report which although I don't have access to the whole report has given me food for thought regarding mastectomy, metastasing and radiationtherapy.  Finally I feel that I'm getting a better picture.

Greta called back early today to say that she had been able to speak with the other consultant (mine's still on holiday) who has had a look at my notes and test results etc.  The other consultant has agreed to take one of the patients off my consultant's already brimming surgical list from the 5th November, so that my appointment remains on the 5th November with my consultant.  I can't express how relieved I am to have my operation as expected on the 5th November and with a consultant whom I trust.

 

Today I spent a long time searching through pages and pages on the internet.  I was able to find some information about a phyllodes tumour but very little information still (read none!) about a malignant variety.  Why can't I find information?  I deserve answers.  I deserve to know what this is about?  I need to know more so that I can prepare for the road ahead.  I'm scared and frightened and don't know where to turn to.  I'm lucky in that I have support from friends and family (although I'm somewhat angry at Mum for not being here to help) but I need answers, real answers and facts, numbers and statistics.  What is my prognosis?

Greta called me today following my queries on the answerphone.  She's brilliant and what a fab service she (and their team) provides.  She gently assures me that have spoken with another consultant (mine's on holiday) the believe that it would be best to do another excision first to then test this and then, if need be, perform a mastectomy.  The voice of reason was there - she asked if I could cope if they did perform a mastectomy and the testing of the removed tissue proved that they had got the tumour in the first operation.  How would I feel having unnecessarily authorised the removal of my breast?  She's right - that would fill me with horror.

 

She apologised once more that the literature given to me about a Phyllodes Tumour has only one line about a malignant version and tells me that she's been speaking with the publications and reference departments asking them to see if it would be possible to ensure that there is a publication about a malignant phyllodes tumour however she felt that they wouldn't do this as it is so rare and resources were tight and needed to be spent on more prevalant cancers.

 

Greta also noticed that I had been booked in for the 2nd operation on 19th November but remembered that I had discussed my music request for the operating theatre as Handel's Fireworks on the basis that it was Guy Fawkes ie 5th November.  I asked that if there was a reason that the operation should be later then that was OK but I would prefer it sooner and over with but it MUST be with the same consultant - I totally trust him to do the right thing, for me.  Could it be an administration error?

Oh, could I wait for yet another 14 days?

I have been experiencing a sharp stabbing pain in my right breast.  It feels a little like a hot poker being stabbed into my breast and pulsing with pain.  The pain only lasts for a few minutes however takes my breath away and all I can do is try to breathe through it whilst the tears run down my cheek and I wince with pain.  I don't know what's causing it ie if the pain relates to the tumour or the reconstruction.  I did have shooting pains before surgery but not to this intensity.  Today I decided that I really needed to check in with my Macmillan nurse and ask if this is normal.  I also wanted to ask about a mastectomy.  Are we assuming that the best course of action is to simply do the operation again and then do a mastectomy, if need be - ie to do our utmost to preserve my boob?  But if this method might give the tumour a chance to grow further and mean that the outcome may be worse, would it make more sense for me to elect to have a mastectomy at this piont and eliminate earlier the chance of it spreading? 

 

Unfortunately I got the answerphone and left a message for Greta outlining the above.  I felt dreadful just leaving a message - what would happen if she didn't call back as promised within 24 hours?  What then?  Who can I ask?   

Today I'm up very early to drive to London and get that appointment with my Doctor.   I need to ask him if I should be signed off from work - I know I can't concentrate or come to that sit up at a desk for any length of time.  I also feel that if I am signed off from work then my employers will ensure that my role is properly resources as my team have been taking the load and doing ridiculous hours under extreme stress.  My team were already pushed and doing additional hours due to redundancies and new projects so I've felt terribly guilty being out of the office with Mum's death and now this.  The way I'm feeling right now I'm worried about work, my team and stressing about what's going on but feeling helpless to do anything or cope with the day to day of life. 

 

I'm also wondering how I can possibly do my bit of sorting and sifting Mum's possessions and organising the house if I'm working - not that I feel I could drive there or lift anything anyway.  I'm feeling useless.  My doctor however laughed at me and said he didn't 'do sicknotes'.  I was a little shocked but didn't even have the energy to question this.  He then insisted that I had a flu injection to help with my immunity whilst I'm in and out of hospital.  As I was leaving he handed me a note and laughed - I looked at it and he told me off for thinking that I would only need a couple of weeks away from work if I was facing the treatment he knew was already booked in.  He then said he'd signed me off for two months and even that would be reviewed after the results were in from the next operation.

 

This made it all so very real that I wouldn't be up and about quickly.  I think I'd thought I would be so to be 'signed off' for such a long period of time was yet another shock or reality check. I'm devastated and once again call on Millie's support and call in for a cuppa/lunch. 

 

Millie had also been doing research on the internet and had seen a lot of the same articles but also some others, so it was good to compare notes.  It was horribly obvious that we were both skirting the worst scenarios though and eventually we got there. talking round and round until eventually I asked Millie to help me ensure that my wishes were looked after 'just in case'.  It was, though, a relief to then talk candidly about the articles and information that we'd both seen but avoided talking about as it was too scary.  BUT I do need to remember that I need a balanced view and that not every treatment, operation, eventuality is for every person and indeed if I'm armed with all the facts and figures, I can take some control of my own treatment and proactively control my future... because there is one!

I've managed to find a Science Daily report but cannot access the whole report.  This is so frustrating as it actually seems to be imply that they've carried out a clinical trial and may give me a key to the best approach.  Science Daily. 

 

You can only imagine how many sites and pages I've searched and read to try to get a good balanced picture of possible treatment to allow me a future.

 

I have to keep breaking off my search whilst my eyes mist up with tears or I need a snooze or get a pulse of pain.. this is hard but I need to do it before I go further.

 

A couple of things that are so definately obvious is that it does metastase (which means spreads) and it can recur once removed.  Chemotherapy doesn't work but radiationtherapy although hard is worth doing just to reduce the risk of recurrance.  Mastectomy is a good option to ensure that the tumour is removed in full early on.  The tenticles that the tumour grows and spreads out are difficult to see or remove completely which if left will allow the tumour to recur. 

 

I'm not liking what I'm finding but I know that this doesn't happen in every instance and my consultant may well have got it all and nothing further is required.

I was up very early and connected to the internet.  I'm determined to find something to help me work out what next.  What does this really mean?  I can't believe it's so rare that nothing is available I've just got to rummage.  I start, of course, with the cancer organisations in the UK and hope that I can find one as this will mean that I can call them or maybe call in to see them and find out more - nothing but a mere mention that it exists and is rare. 

 

Breast Cancer Care UK's site has only a short mention of what it is and some options to explore - but when I read this page I realise that really they don't know for sure what to do... or not enough to quench my need for information.

 

I can't even find a reference to it on the Macmillan site or Cancer Research or Breakthrough Cancer and believe me I think I searched through every page scouring for information.  I guess that as it's not common their resources are spent better on more common illnesses.  But I'm not quite sure how this makes me feel except very very alone and yet more frightened at the unknown.

 

I then search through as many medical sites as I'm allowed to view (there's a lot that appear to have the information but you have to be a doctor or have a secret handshake to see the information - why?).  WebMD usually comes up trumps but this time only tells me simply that "The following are tumor subtypes that occur in the breast but are not considered to be typical breast cancers".  Wowza that's helpful - NOT!   Doctors Doctor site has an outline in lay-persons language but then goes on to medical speak and I get lost in the detail.  I'm fuzzy enough as it is and taking things in and concentrating on things is out of my league at the moment. 

 

I'm exhausted and tearful at the lack of information available.

I left Millies and headed home today but not before Millie and I had talked at length about what happened yesterday.  What does it really mean?  We read and re-read the report but all those long words don't mean anything and we look at the leaflet that I've been given by the hospital about phyllodes tumours but note that the only mention of a malignant version is one line and simply says refer to your specialist... oh great!  Once again I'm asking myself what does it really mean, is this really happening?  Would that explain why it still hurts sooo much?  Reconstruction or the tumour still growing?  Now another wait until my next operation which is booked in for 5th November but seems like forever away.  How am I going to get my head around this if I don't know what it is, or what is required to get clear of it?  My mind is buzzing and Millie is loathed to let me go but I just need to get into my own space and cry... again!

 

Ed helped pack my bags into my car and I wished I had someone to take them out when I got home but was so tearful when I got back I daredn't call a friend or colleague to ask.

 

The drive home was really painful - you forget that wearing a seatbelt is difficult not to mention every bump and lump in the road.  Thanks heavens for surgical bras and waterproof mascara.

Today I went back to see my consultant to get my stitches checked.  Millie drove me up to the hospital and after a couple of hours in the waiting area,  We anxiously hoped this routine check would be over and down with quickly - we had shopping and lunching in Kingston planned!! I was called in to see the consultant. 

 

I should have realised that there was something odd when he came into the consulting room with a Macmillan nurse - but I've never been through this before so again, why would I notice anything odd!  Mr Davies shuffled a little in his chair after sitting round and talked briefly about the operation he'd performed.  He looked a little crestfallen when he said "Anna I'm really sorry but he'd received the path results and they indicated somethine else" - I had an urge to nip round the table and give him a hug!  I felt terrible for him as he had done such a fantastic job to reconstruct my breast and had they managed to get clear margins, I'd require nothing further.

 

He then went on to talk about the 'lump' that had been removed and the histopathology report which said that the lump (or should I say lumps) tested not as benign fibroadenomas but as malignant phylloides tumour.  A very different result and so very different in next steps.

 

The consultant and nurse were a little taken aback when I said that I knew about phylloides tumours and had thought that this may be what I had (albeit in a benign form) as I had done a little internet research and diagnosed myself with this - the main aspect being the burning feeling on the skin over the tumour and hot sharp stabbing pains in the breast. 

 

They told me that as this is very rare (particularly in a malignant form) neither of them had actually seen or treated one and also told me that I had to remember that it wasn't Cancer as we all understood it in that it doesn't spread to other cells and is contained purely in the breast tissue.  He then gave me the histopathology report with a wry smile saying that knowing that I was in IT I would need the report so that I could spell the long medical words! 

 

The next steps advised is to perform another excision to remove the tumour and ensure that we get clear margins.   Radiationtherapy may also be considered.

 

I was then taken to another room with the nurse to talk things through further... that's when it really hit and the waterworks started!  I just kept thinking "why me?", "why now?", "what next?" and a million other questions...

 

As I went back into the waiting area I was in pieces and poor Millie looked up from her book to see me standing there like a lemon with tears running down my face.  (I since felt awful about not being in control as all the new patients with questions running through are now probably wondering if that's going to be their result too). 

 

The report told us the following:

Specimen

Fibroadenoma right breast

Macroscopy

Two pieces of irregular fibrofatty tissue 85mm and 25mm, weighing 33g.  7(7) krp.jc

Microscopy

Sections show pieces of a phylloides tumour which is associated with marked stromal overgrowth and slit-like compressed epithelial lumina.  Frequent mitoses are observed - up to 10/mm2 including abnormal forms (tripolar).  In addition there are scattered enlarged moderately pleomorphic cells present.  There also appears to be infiltration of fat by the atypical stroma.

 

These appearances are consistent with a malignant phylloides tumour.  No vascular invasion is seen.  The lesion appears to reach the margins in several areas.

I don't think I stopped crying or saying "Bollox" over and over for the rest of the day. 

I decide that I've got to grow up and take off the dressing.  I know that if I left it until tomorrow my consultant would laugh at my pathetic-ness and whip the dressing off in one sweep, probably leaving me ouchy.  Millie was out for the day and so had I had a bath and soaked the dressing under a flannel.  I then picked at the corners.  About and hour and a half later I managed to get the dressing off without passing out!   I'm great with other people's injuries but my own - forget it!!  Although I have to confess not only did I feel nauseous having taken it off but the compression plaster was obviously helping me keep it all in place so removing it meant that any movement hurt ten times more!  And very very stupid considering we've got a drive back to the hospital tomorrow over white lines and speed bumps!

 

I also got a message from my Doctor's office asking me to call in for a flu jab and medicine review.  It made me giggle as I don't qualify for a flu jab and am not on any regular medicine so suspect it's just a way for my Doctor to get me back in and see how it all went!  Bless him, now that's service!

The next days passed with me sleeping for hours and lounging for the other hours and a few visitors but I think I was so fuzzy I was probably such a rubbish patient to visit.  I am quite shocked at how tired and pathetic I was feeling after the anaesthetic.  My boob was sore but I still couldn't bear to look at it - although eventually had to.  I was scared when I realised that I couldn't feel anything, had I lost all feeling?  would it come back?  The compression dressing meant that I couldn't see that much and was too scared to take the dressing off - it made bathing difficult but I wasn't removing it!

Eventually everyone else woke up and the ward started buzzing.  I was desperate to leave though and go home (well to Millies) to get under my duvet.  I soon got a text from Millie to say that she was on her way in and had spoken to the ward sister.  I was going to be released into her care and couldn't wait.  My night and this morning was still being peppered with my heart rate and blood pressure being taken regularly.  I was getting quite used to just offering my arm on approach of a nurse!

 

My consultant had to do his rounds first before I get released and he calls round at about 9.30am.  Once again he takes a peak at under my gown at my right boob - I once again look away!  My consultant thinks its hilarious that I can't even look down and is at lengths to assure me that it's OK, I look much the same as before.  He put a compression plaster over the wound keeping it all together and he said will help with the pain and construction. 

 

I believe him and believe that nothing is different than expected.

 

Millie then arrives having stopped off at the ward desk to discover that I will be discharged once I have my appointment card for my stitches to be checked on the following Wednesday so we sit and wait.  I'm awkward, uncomfortable and a in a little pain (but drugs are good in hospital!).  Quite a while later the ward administrator pops round to say that I will now be seeing the consultant on the friday rather than a nurse on wednesday.  Neither of us thought this unusual and left the ward without asking why.

 

The drive back to Millies was uncomfortable.  Every bump in the road, even going over the white lines in a road, hurt, but I couldn't wait to get into bed.

 

I'm not sure where the day went as I disappeared off for a sleep for a number of hours, was up briefly to see the children after school and then think I went back to bed for more sleep.  I was so releived that it was all over and popping the paracetemol every few hours to keep the stinging pain at bay.  I even worked out how I could sleep on my side using a spongey thing that Mum used to keep her neck strengthened with - don't ask but hey it worked!

Another good friend, Nigel, picked me up at 6am and drove me to the hospital for my 7am admission.  I had been quite happy to get a taxi but was grateful for the lift although sorry that it wasn't to do something fun instead of the reality.  The journey seemed like an age as I was living and reliving my night's sleepless night's thoughts and when we arrived at the hospital, I just wanted to run away.  It took several minutes for me to pluck up the courage to go in and wave goodbye to Nigel (who was threatening to drag me onto the ward!)

 

I can't tell you how nervous I was when I got up to the ward.  The lights were dimmed and the other ladies in the ward were still asleep whilst I was shown to my bed to wait for whatever comes next.  Shortly after I arrived another new patient was shown to the bed next to mine.  Her name was Frances and was very chatty.  Fortunately she'd been through this before and was, this time in for an elective mastectomy to remove her last breast (the first having been taken following breast cancer).  Fortunately, that is, for me.  Frances knew what to do and what to wear (or what not to wear), she also was able to put my mind at rest a little with what to expect although in some moments I wasn't sure if I just wanted to sit and stare at the ceiling. 

 

A short while later a nurse came by and measured me up for some very gorgeous TED socks (to stop clotting) and gave me a gown which I was told to undress and put on.  I finally felt trapped in my bed... hey one wrong move and my fellow ward-mates could get a flash!  And then the day long tests began - it seemed like my blood pressure and heart rate was checked over and over again.  Next I saw an anaethesist who looked at my veins - or rather commented that I didn't have any!! They'd gone into hiding knowing what's happening.. apparently I have really low blood pressure.  My heart rate however was through the roof and I got to get my pre-meds early to calm me down.  Shortly thereafter my consultant popped round for a quick chat and overview of the op, not forgetting the lovely drawing he did in permanent marker so that there'd be no confusion about which boob to excise.  Kindly he referred to the op as a mallowectomy which confused the trainee doctors who were accompanying him on his rounds!  Fortunately he also told me that I was second on his surgery list so my wait would soon be over.

 

I was wheeled down to the operating theatre at 10.30am.  At that point I felt completely helpless, seeing the corridors pass by and feeling a little woozy from the pre-med but not really knowing what next.  What does it feel like to have a general anaesthetic etc.  Anyway within a nanosecond of the canula I was being woken up by the nurses.  I thought about asking why they were waking me when they hadn't done anything but didn't have the energy to speak.  I noticed the time was 3.30pm and assumed I must have taken longer to come round from the anaesthetic.  I must then have been wheeled up the ward but don't remember this or anything for ages except the nurses taking more blood pressure tests and monitoring my heart.  Also the awkwardness of the canula in the crook of my left arm attached to a drip.  Annoyingly though this meant that I couldn't bend my left arm nor move my right as I was so sore from the operation.  Sounds ridiculous but I wanted to cry when I just couldn't even move myself up the bed or reach the bed covers. 

 

A while later my consultant's assistant popped round to check my wound.  I looked away whilst she had a look as I didn't want to know what was left or rather what was missing. 

 

When Frances came back on the ward I noticed that she had a drain as well as a drip.  Throughout the night the nurses checked her drain and I was grateful not to have one.  Somehow not having one made my operation quite small and insignificant.  I already felt sore and was struggling with if my scars would change me and how I looked.  Ridiculous I know but still something playing on my mind.

 

The night was really uncomfortable and I'm not sure if I slept at all.  I couldn't move becuase of the canula and drip on my left and my surgery on my right and besides I sleep on my right side or front... slightly difficult!  My left hand had swollen up so that I couldn't bend any fingers and felt every pulse throbbing in my fingers.  I felt miserable and tearful and wondered what had been done whilst I was in surgery.

Kingston hospital have summoned me to be tested for everything and importantly to ensure that I won't bring any MRSA into the hospital.  Actually, it was good and calmed me down a bit by being at the hospital, able to talk things through with the nurse, and see the ward that I'll be on for my op. 

I'm finding it incredibly draining and tired all the time waiting for the operation.  I'm pleased it's only a benign lump that will be simply sorted out but I've never had a general anaesthetic and been in hospital.  I'm anxious about it and also in pain so can't wait for it all to be over.  I'm hating the waiting but knowing also that my hospital and doctors have been brilliant at rushing me through - I am grateful but no matter what it's still too long and it hurts and I want my Mum.

Today I went shopping for pajamas that do up at the front and a post-surgery bra.  Usually I would be looking fo some lovely matching lingerie and choosing the prettiest or sexiest instead I found myself looking for comfort and practicality.  I left the first shop in tears as all that was on offer was hideous in style, harsh in material and utterly practical.  I then head to M&S as I'd read that they stock post-surgery bras.  I have never been so embarrased or humiliated in my life.  I couldn't see any suitable, practical, front-fastening bras so asked an assistant.  She shouted across the shop to her colleague about what we were looking for and why so everyone looked at me.  The new colleague then said to me 'oh yes we keep some samples but they're not very nice and they're probably at the bottom of the cupboard'.  She rummaged around and then dumped them on the counter in front of all queuing and announced this was all they had and I'd have to go somewhere else if these weren't right.  I left, shuffling out of the shop, hating the fact that I had to look for one any way but didn't need to be treated like a second class citizen.  I didn't do anything bad to need this operation.  It wasn't my fault.  Next shop was Debenhams where the young shop assistant said 'we don't stock those things'.  I left with nothing feeling totally battered.

 

Is there any reason at all why lingerie manufacturers can't make post-surgery bras that are pretty and attractive?  Can't the shop assistants understand that this is a trying and difficult time?  Perhaps post-surgery bras should be provided by the hospital to save us the humiliation. 

It's difficult being focussed on anything.  I'm either trying to handle Mum's death, sorting out the many tasks that we need to do to notify companies and people of Mum's passing or stressing about my impending operation - being reminded the whole time by the pain I feel in my breast which still catches me off guard.  I'm still finding it difficult to sleep and can't get comfortable anymore as I sleep on my right side or my front - neither of which is an option without waking me up ouchy.

I arrived at the hospital in plenty of time and took a seat in the waiting area.  I anxiously looked up every time the door opened and eventually my name was called.  As I entered the consultants room I realised that I was easily memorable with my very red hair (hey I needed some colour in my life!) and waited.  My consultant and a trainee doctor entered the room and the consultant and I had the usual banter about me being in IT and him using long medical words that a 'natural blonde' couldn't understand!   At least however we don't have cancer in our family history and I'm just lumpy bumpy. 

 

The tests confirmed that the lump was a benign fibroadenoma and can be removed with a simple lumpectomy.  I once again reminded the consultant that rather than calling it a mastectomy or lumpectomy, both of which sound harsh and painful, we should call the operation a mallowectomy which sounds sort of squishy and much less painful.  The intern doctor looked on and slightly shook his head at our joking about something so serious.  We talked a little further about the operation and he explained that he would go in with a cut around my nipple to reduce any additional scaring and ensure that any scaring was along a natural line and therefore hard to see.  I was releived with this and pleased that he was so not only concerned with the type of lump but also the cosmetics of the operation.  It sounds so silly but this was a really huge thing for me, and I believe most ladies, as the first thought I had about my current situation was life without a boob.  I love my boobs!!

I didn't make the ball with my brother and his wife.  I'm gutted as I had really really been looking forward to glamming up and having a good boogie but I really couldn't have coped with the pain yesterday not to mention a strapless dress.  My boob is so sore from the biopsies and bruised but also the lump is incredibly painful it's making me feel nauseous - I wonder if the pain will dissipate a little once it settles down after being squished for the mammogram.  Now we've got to wait for the test results.  

 

My mind is sooo active all night and I'm thinking and thinking about so much and what if's, even the prescription sleeping pills don't seem to keep me asleep for more than a couple of hours.  I think the continual lack of sleep is also not helping me cope with everything.  I can't stop crying.  I suppose I'm grieving for Mum and also dealing with anxiety related to the lump but I can't divide my feelings between them... I just feel helpless.  I guess it's times like this that I wish I was married or had a long term partner to confide in and who understands my innermost feelings.  Someone who will give me a hug and make me feel secure and safe.  Isn't this what your Mum's for at times like this? 

The 4th September felt like the longest day in history.  My appointment began at 9.45am with my first meeting my consultant.  In my usual way, I hid my anxiety with a mixture of smiles and jokes.  I had convinced myself that I was going to be wasting their time and almost apologising for it.  I introduced myself as a 'lumpy bumpy' sort of a person who has had a number of cysts and moles removed over the years but nothing to worry about and this would probably be the same.  My consultant asked me if there was any history of cancer in my family to which I replied with a confident "No but remember we are a lumpy bumpy family, but no cancer".  He checked my breast and advised that I would now be sent through for a mammogram and possibly an ultrasound and to go back to the waiting area until called.

 

I was eventually called through to the mammogram area of the hospital at the same time as another lovely lady in her late 50s.  I quickly realised how frightened this lady was and it took all my NLP skills to remain calm in myself and offer support to this other lady. 

 

This was the first time I had had a mammogram and found the whole experience excrutiatingly painful.  I'm not sure if it was necessary for the nurses to be quite so brutal and to pull my breast between the sheets of plastic nor to twist the plates tighter to squash my already painful breast... but it was necessary (although this piece of equipment MUST have been invented by a man!).  I knew that I had to remain calm and pretend that it was a breeze so that my new friend was less nervous about her mammogram.  I think I managed it.

 

I then waited for confirmation that the mammogram was clear enough and if I needed an ultrasound.  After an hour or so I was taken to another room and a radiologist conducted an ultrasound - a much more pleasant experience.

 

Back to the waiting area to be called to see the consultant and get the results of my tests.  My new friend and I sat and talked about anything but what was happening to begin with and then shared our common interest in why we were there.  I think this helped calm my friend but made me more nervous.  I had laughed with the consultant and again with my friend that I was meant to be going to a ball this evening and my dress didn't go around my bust so unless I could have a quick reduction that day, I would need to purchase a new dress in the next few hours!

 

Eventually I was called in to see the consultant.  He advised me that the mammogram had indeed shown a lump but the ultrasound indicated that there was another small lump underneath.  He thought the scans indicated that the lumps were a fibroadenema and would send a biopsy sample to the lab for testing.  In order to get a good sample with both lumps being included he had to take three deep core biopsies which left me sore and bruised. 

 

I had to talk to someone and called my friend Millie to ask if I could call in.  Once again I fell apart on her and Mark, her husband, whilst I told them about my day and my worries with their finding a lump.  They've been so fantastic at looking after me, with Mum and now this.  I'm so very very lucky to have such wonderful friends but am longing for a time when I don't fall apart in tears or feel that I'm being totally self-absorbed with problems in my life!

 

Millie makes me promise that no matter what, if there's an operation, I am to move in with them and be looked after until I'm well enough to leave.  I'm not allowed to leave until I promise.  This is such a blessing and actually a huge relief to know that I'm not alone.  It is odd, I have so many good friends and lots of family around who are very supportive of me in everything I do but at times I just want to hide and pretend it's not going on or don't want to burden people with my problems so simply make light of them and appear that everything is well when inside I hurt.  Another lesson that I'm going to have to learn in all this is to be honest and up front about what I'm feeling and what I need... and ask for help, if I need it instead of being so bloody minded and independent.  That's a tough lesson for me...

My mobile rang at 7am and blurrily I took the call.  It was the hospital calling to say they'd received a fax from my doctor and wanted to arrange an appointment as soon as possible to check out the mystery lump.  The appointment was made for 4 September - I week away but I think I'm going to be grateful for my sleeping pills!

I am so lucky to have the best doctor in the world.  He knows that if I ask about something there is a genuine reason why I'm asking, he also knows my history over the past 20+ years.  So when I said that I'd found a lump but dismissed it with a comment about it probably being due to stress, he told me that it would still need looking at.  He checked my breast and although I saw a flicker of panic on his face, remained calm when he said that he'd refer me but not to worry.  He went on to give me a prescription for a few sleeping pills because knowing me, he said he knew I would worry!

 

Should I have called the Doctor earlier - YES!  Lesson learnt - please seek professional advise as soon as possible if you find a lump.  The sooner you get it checked the sooner you can get it gone!  AND if you don't check your boobs, please do so regularly.  Ask your nurse or doctor if you're not sure how to but please check.  (nag over!)  If you don't feel you can ask for help use this guide but please please check www.womens-health.co.uk/breast_exam.html

Hindsight is a wonderful thing.  I should have seen my doctor sooner but I was determined that the lump was 'just going away'.  Surely it had been down to all the upset and emotion with Mum's death... surely it was just due to my hormones being all over the place... surely it was anything other than cancer - right?...

 

During a meeting I find myself taking a sharp intake of breath whilst there is a piercing pain in my right breast.  Can I ignore it? (as I've done so many times before) I'm thinking to myself, I just need a holiday and relax, surely it can't be anything else. 

 

I call the doctor's surgery and speak to the lovely receptionist who immediately takes me seriously saying that of course I should see the doctor as soon as possible.  She's squeezed me in for an appointment in a couple of days time.  I'm so relieved to be seeing a professional but am still convinced that he'll just say it's nothing, don't worry.

Mum's cremation and thanksgiving service is arranged for today.  Fortunately during the final months I had been able to discuss with Mum what she would like so when it came to the arrangements it was easy.  I knew that we'd got it right.   We even managed to get 'Look on the bright side of life' playing at the end of the service (as requested).  I can totally advocate telling someone what you'd like in advance.  I'd like my body to be given to medical science - they might be able to find a reason why this cancer attacked me!  If not, cremation please but don't bother with the expense.. spend it on a party!  Ashes to be scattered in Berkeley Square, London and a bench to be placed with a simple plaque to identify it... you're all invited to come sit and enjoy my favourite peaceful place... I just love that place.

 

I digress.  On the morning of 20th as I'm getting ready for the day ahead.  I'm nervous and scared that the day will go OK and get dressed in lots of colour (No Black requested by Mum!).  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".

 

I then put this to be the back of my mind in the hope that he was right and would deal with it if it hasn't gone in a couple of days.  Besides I had to get on with my mothers cremation and memorial service... I'm too young to lose a parent let alone have cancer... and we don't have cancer in our family, so of course it must be hormonal or emotional or just something random... maybe I've bashed myself and it's just a bruise.

During the two weeks following Mum's death, I was acutely aware of the support that I received from friends, family and colleagues.  I busied myself with organising, planning and arranging things.  I did anything to stop myself from falling apart in front of anyone but inside was hurting and not sure how to deal with it.  My sensible brain keeps reminding me that she was ill for a long time and we knew this was coming... my emotional brain keeps reminding me that she was young at 70.  When will I start to see beyond this?  When will I stop crying?  When will this physical pain go away?

I think this is the start of the journey I want, and feel able, to share with you.  My Mum, who I, like so many daughters had a sometimes difficult relationship, had Multiple Sclerosis.  Mum was always someone who could make something of nothing and be enormously positive about what she can and will do.  A lot of close friends and acquaintences didn't know Mum had MS until the later years as she was determined 'Just to get on with it' and do whatever she desired to do.  When her husband (my step-father) died she suddenly found it harder and felt very lost and alone and her MS got worse quite quickly.  Until the end of last year she lived independently, in her own home and drove and adapted car or terrorised the pavements in an electric buggy.  It was felt that so that Mum could remain in her own home, we would employ a carer to live in and assist.  Quickly she needed two 24/7 live-in carers as her body slowly stopped playing nicely.  Until the end of July however she was still attending concerts in the local church and films in the village hall.  

 

At the very end of July Mum said to me on my weekly visit "You know what, I think I've had enough now".  I knew then that it was only a matter of time but also knew she was desperate to ensure that her latest grandchild arrived safely into this world. 

 

On the morning of 7th August, the call came to advise that she was a grandmother again to a little girl, Celeste.  After receiving this news she asked the carers for a good clean and scrub up, despite being very very weak.  She then asked them to call my brother and I to be with her and said it was time.  We arrived and sat with her, my brother having been able to print out photos of our new neice and show Mum, we then watched the life ebb away from her.  It was incredibly so peaceful and painless - if you could have a checkbox death, this would be it!