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…

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”!!  

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 knowthat 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??