6^th August 2010 - hmmm

I recently bought a new Apple iMac as I'd heard everyone saying how wonderful they were, reliable, easy to use, better for graphics, website and design etc - something I figured I'd be doing more of for the event.  And another 'good point' Apple customer service are excellent!  So I invested.  It arrived.  I set it up.  Within a couple of days I got fed up with the keyboard randomly typing kkkkkkkkkkkkkkkkkkkk or just shutting down.  Apple said it's faulty and are going to swap it out.  ;-)  I couldn't take it into the store to swap as I'd bought it online.  I hadn't set everything up yet (including the backup) - due to the difficulties when keyboard types random letters.  Thought I'd do that when new keyboard was here.  Noticed that email had downloaded to Mac and deleted original messages from hotmail account - haha read small note about 'unchecking' a box on set up.  Thought I'd sort when new keyboard arrived.  BUT DIDN'T account on entire Mac dying yesterday!  Apple have agreed it's faulty and are going to swap it out.  BUT my email however may be irretrievable and if I were to ask Apple to attempt retrieval they a) can't guarantee it would work and b) would only be giving me a fixed iMac not a new one in replacement!  Mac-friendly friend coming over tihs weekend to attempt recovery view their lappy.  Now let's recap - "reliable, easy to use" "excellent customer service".  I've now got past angry and now upset and worried that all my hard work at contacting people for the conference via email is now gone... Apple didn't seem concerned that I'd be using their computer for anything more than surfing the net... so far not a great loving feeling for Apple!

 

Oh and me - boob very ouchy and bruised today.  But hahaha, realised that if they do many more biopsies I'm not going to have a booby left.  Thank heavens for my silicone inserts - I'll just have to get bigger ones!  GoAnna Proverb - Many biopsy = mastectomy!

Ok so after a sleepless night at Millies we've shopped, wandered, occupied and generally taken my mind off it (although I did beat the kids at Scrabble!)... then the appointment at the hospital loomed.  Quickly taken through to the scanning area to discover that I was the only person being scanned this afternoon - a bit eerie as usually its packed with nervous women in strange hospital gowns.  Did wonder if it was a ruse and another radiographer joke!  I had been dreading the mammogram and threatened the mammographer with a bop on the nose if it hurt - that told her who was boss!

 

Actually didn't hurt that much - or perhaps just not as bad as before - but half way through I decided that the mammography equipment was a modern day alternative to the photocopier at the office party.  Instead of copying bottoms at the Christmas party, you can have a picture of a boob!  And yes I did ask the mammographer where I could get a glass of lambrusco or a rum punch!

 

Next the biopsy... Ultrasound to find the area, anaesthetic injected (ouchy) and then the biopsy gun.  The third 'shot' hurt but probably because it was deeper and beyond the anaesthetic but they now have three slices of me and many mammogram photos to examine and test.   Fingers crossed will just be some scar tissue which was obscured by the seroma (fluid).

 

Right now, am feeling fine... anaesthetic with wine - hurrah!  Results next Wednesday.

How do you find the resolve to keep on fighting?  I hadn't put this one out there for me to consider as an option.  It took a lot of me to get through it before, to find reasons for the what if or when?  How or why?  Where or who?  So many questions that I answered once and struggled with at the time and now I don't know if those answers or reasons are good enough a second time round.

This weekend has passed in a fug (that's a phrase that Mum would use but I think you get it).  I don't know what I did or even if I managed to finish any task I started.  I look around the flat and there seems to be 100 things that are undone but need fixing... a bit like how I feel.  Broken.

I don't know what is worse - not knowing or thinking the worst.

The really annoying part is I don't seem to be able to get myself in a good frame of mind and consider a) that it really is a radiographer's joke; b) that it really is scar tissue; c) that it's just me being Miss lumpy bumpy but nothing untoward; or d) the previous scan they compared me with belonged to someone else; or e) the radiographer didn't have her glasses on!  Right now I have only one question for me... where's Miss Blinking Positive gone?

This probably reads as the most self-indulgent entry ever - possibly; probably but always honest.

But tomorrow  is Monday and it's a working day.  I have heaps to do, to organise, to write, to create.  Calls to make, emails to return, websites to design, research to be done... I don't have time for this...

Gosh I hope tomorrow is a good day.

Well that didn't quite go according to plan.  Was going to pop in, get covered in that weird ultrasound gel, have a radiographer poke and prod at my boobs (all sounds a bit jolly perverted but honestly it really is for medical purposes!).  I was then going to run from the hospital to do a little retail therapy before a Apple Mac lesson... (yes, finally I'm iMac positive!)

However (drum roll), the first bit was according to plan.  Well the turning up at the hospital, the appointment being late, dressing up in weird cotton dressing gowns that don't quite fit (an interesting look on some of the attendees), getting covered in gel and the poking and prodding bits anyway.   The bit that wasn't quite according to plan started when the doctor insisted on working out if it had been 12 months since my last mammogram and mentioned that they're better at picking up signs of phyllodes than ultrasounds... hmmm clue number 1.  Next was the questions about exactly where the excision site was and if there was a lot of scar tissue... hmm. clue number 2.  And the final clue when she left the room, told me to wait and then I heard hushed voices outside the room... all so comforting!

Anyway, the upshot is that she found the previous scans and has noted that there is a new suspect area.  She said that it may just be scar tissue but even without any medical training, I suspect that scar tissue doesn't appear 8 months after surgery has completed!

So, I'm booked in for a mammogram and biopsy next Wednesday.  These will then be examined/tested and the results presented by my lovely oncologist on 11th August.

OR conspiracy theory... The radiologist is playing a jolly little jokette on me as pay back following the fuss I made about my appointment being cancelled last week... oh how I'll look back at this and laugh (right after I bop them on the nose!)

And yes Millie has once again rearranged her schedules and farmed out her lovely children so that she can come with me to both appointments and look after me.  

Note to self:  Must invest in waterproof mascara and packet of tissues... blinking ridiculous behaviour today to even think about attending the hospital without backup!                                                                                

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

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

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

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

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

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

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

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

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

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

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

Errr I don't think so.

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

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

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

Today I had the good fortune to be invited to attend this meeting.  I recently attended the AGM of the whole group and had a good understanding of the LINk program.   I perhaps hadn't understood how influential however this sub-group could be and to be a part of it, is amazing. 

We discussed new projects and programs to be implemented in West London - ideas I understand that had started at this sub-group.  We also discussed awareness issues around breast cancer screening and self-examination for the community and suggested many ways that perhaps this could be improved.  Another topic was also the importance of follow up schedules with cancer patients (ironic given what happened the following day with me!).  Also discussed was how a patient can be assured throughout treatment that they are being supported and know what's happening to them.  Again suggestions were made.

I'm very much looking forward to being a permanent member of this sub-group and watching our ideas, feedback and experiences perhaps changing the way things are being done or simply an understanding of these issues being taken back to the medical teams and NHS.

A friend said to me at some point in this journey I would realise that not everyone makes it and that I'd find it hard everytime we lose a friend.  Will I ever be able to explain it or understand it?  Today I heard of a friend I met in Atlanta who passed away today.  Lisa fought breast cancer bravely and with a smile on her face.  I met her online before I went to Atlanta, she took the mickey out of me and my English ways!  Lisa volunteered for a special job which was to make some 'bling' to attach to our name badges, as she thought she wasn't going to make the conference and wanted to contribute.  She did make the conference and I wore my 'blinged badge' with pride throughout the conference and have looked at often since I returned - it reminds me of someone who is full of life; Lisa.

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

Ickle update - can't tell you anything at the moment, but it's coming along nicely... watch this space!

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

 

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

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

 

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

 

I tell you this for two reasons:

 

1/  Please keep Jolene in your thoughts and prayers.  She's a fighter and the first thing she did when she woke from the operation was to 'give cancer the bird'.  Feel free to shout out the war cry "Phuck Phyllodes"!

 

2/  The conference/event in London is for breast cancer survivors, not Phyllodes.  However as the surgeries, support and emotional and physical affects are the same, I would love the conference to also be a source of new friendships and support networks for my fellow rare Phyllodes survivors.  If it is at all possible, I also aim to have a keynote speaker at a workshop discussing Phyllodes. 

 

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

 

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

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

About 18 months ago I heard about Wealth Dynamics and wanted to learn more.  At the time it was for self-improvement and understanding.  So much has happened since then and my focus now is that the principles of Wealth Dynamics would be extremely useful in putting a team together to ensure the event takes place.  I have always known that I'm not perfect ;-) and can't do everything brilliantly but knowing when to step back and when to focus is essential.  It is also imperative that I can identify different styles and mindsets in the people and organisations that I will be working with.

 

A month or so ago I heard that Topher Morrison was hosting a one day workshop in Norwich and I decided to go.  Insightful and enlightening.  Another bonus for me was that after lunch we played 'opportunity knocks' where we broke off into groups of 5 and presented our 'goal' to the group and also identified the 'types' of team players we needed to create our perfect team.  Then we voted for the 'best' goal from the group.  The winners then went to present to larger group and the winners from each larger group went through to the next heat until we were presenting to the whole delegate attendees.  I'm quite proud to say that I won!  What a fantastic experience. Presenting my goal to so many people.  Getting feedback after each presentation about what worked and what didn't work.  Equally important was that with each presentation I was able to see the excitement in the group to my project and the belief that I really am doing truly so important and needed.  A number of attendees spoke to me after the event endorsing their enthusiasm earlier.

 

I do have doubts about what I'm taking on particularly at the sheer magnitude of the tasks ahead.  So it is a wonderful boost to hear words of encouragement and support and also to hear from others who have been diagnosed or come through surgeries of the importance of tackling some of the workshops and discussions that I'm intending to include at the event.    So to those of you who have offered your skills and support - thank you.

Hellooo all.  I'll start with a quick apology - if you're hoping to catch up with me whilst I'm 'between jobs' then I apologise... I've been busy!  Call me, nag me, email me but bear with me when I have to squeeze you in!

 

So what have I been doing?  My nephew came to stay for the weekend... he had worked out a Wii competition, croquet games and a visit to the cinema - exhausting but fun.

 

Searching, researching and networking - I've added and updated lots of areas of my notes for the project.  I was lucky to be invited to attended a 2-day Macmillan Conference and found the experience incredibly enlightening as to what projects are underway, what projects are planned and also understanding what role Macmillan GPs and other practitioners play in obtaining the best 'interactive' service and support between oncology teams and patients.  I am also hoping that some of the speakers may be involved in my Conference too, so you can all benefit from their wisdom, experience and positive approach too.

 

I also learned that both Macmillan and Breast Cancer Care have programs whereby cancer survivors can become 'voices'.  Both these roles allow patients to voice their opinions and participate in decisions and outcomes of how care and support services are provided.  Invaluable and perhaps someting that you can do to 'put something back' in your areas.  Having spoken to a number of Macmillan Voices, I'm also heartened that the hours required are not onerous and flexible so if you're still undergoing treatment or have limited time, it may still work for you.

 

Right gotta dash.. off away again...  catch ya later xxx

Whooohooo after a little light lunch with some old friends, I went to the hospital to see my oncologist and get the results of my scan... which of course, was absolutely fine and a joy to see everyone! 

 

Also, a girl on a mission, I was able to see my Macmillan nurse and tell her what I'm up to.  She was wonderfully supportive and was able to confirm some of my ideas and also suggest some speakers and organisations to contact that I hadn't got on my list... how brilliant! 

So much for having a month off... I'm not quite sure I've worked out this 'chilling out' thing.  I did manage the lady who lunches thing but also discussed the ins and outs of setting up a registered charity... I'm very lucky to have such informed friends and ones that offer their time and expertise when I need help.  Also how great is it to be able to catch up with old friends and relax without the need to rush back to work.  I might just need a little bit more sunshine before I head off onto the golf course though! 

Gosh so much has happened since my last update... some scary... some exciting... but all positive and moving forward - now that's got to be a good place!

 

I've been studying hard at NLP and a few days ago received my certification as a Master Practitioner of Neuro-Linguistic Programming, Master Hypnosis, Advanced Subconscious Reprogramming, Master Results Coach and Performance Consultant.  I'm excited that I shall be able to utilise a lot of my new skills in my next challenges and goals.

 

Today I left full time employment with a little sadness about leaving my colleagues and friends but pleased that I've handed it over to some wonderful and capable colleagues who will excel in their new roles.  I'm also a little anxious about not having any regular income however believe wholeheartedly in my new project so know that money will come to cover my costs thereby enabling me to dedicate my time and energy to the project.

 

Soooo... what am I going to do?  Well it's simple really... There is going to be a conference/event in the UK/Europe for people affected by breast cancer.... and I'm going to make it happen.  Exciting... Rewarding... Amazing... Challenging... I'm passionate about my goal and believe there's a need and know that this will make the most incredible difference to so many - just as attending the YSC Conference in the US did for me.  It changed my life and now I have changed other aspects of my life and created a position for myself where I can help others change theirs, positively.

Miss you and wish you were still here to share my life, dreams and goals.

I might not be running a marathon but this song goes a little way to explain why and for whom I'm doing this...   Melissa Etheridge's "I run for life"

Today seemed like yet another milestone moment in my journey.  This time however for what I consider to be, the right reasons.  Scary and frightening but at the same time, exciting and exhilarating. 

I made a decision that I AM incredibly thankful for my lot, I'm able to do so much and have the tools and drive to make things happen.  I may not have what many some others may consider as 'making it', of being where we should be by the time you reach 42, I might not be married with children, have a large house with little mortgage to pay, or holiday in glamorous locations twice a year but what I do have is my health and the ability to follow my heart with decisions that may appear risky but hold so much potential reward.  So I'm stepping off the corporate ladder and creating a path that allows me to help others.  I've resigned from my 9-5 job (well actually 5.30!) and am moving back to Londontown. 

Why?  That second when I was asked to gather round for a photo of international attendees at the Conference in Atlanta was a defining moment.  Out of the approximate 960 conference attendees only 8 were from outside the US and I was the only one from the UK.  I've said it before and it's stuck with me so boldly that I was so blessed to have been able to go to the Conference, to meet people in a similar situation; share stories and experiences; hug others with Phyllodes (something I never believed possible when they told me it was so rare that less than 1% of breast cancer is diagnosed as Phyllodes and doesn't affect 'young' women); network with others whom I'm still in touch with; gain a support network and be part of the supporters as well as the supported; find out how I can manage stress through meditation; eat better to ensure that my body is best able to fight cancer; attend seminars about medical trials and updates in the field for answers; understand that I'm not alone when I cry at a moment’s notice and for no particular reason; realise that I need to find my 'new normal' as who I was before cancer is no longer; ...and a million other reasons why.

It's these reasons and more why I feel passionately that the opportunity of attending a conference like this should be offered to UK and European people affected by breast cancer.  As a nation we're not great at talking about our feelings, mentioning the 'C' word or asking for help, discussing side effects or how you put on makeup when your head hair and eyelashes have fallen out... But when you spend time on cancer forums or waiting rooms in oncology units, you quickly know that there's a need for a conference and an open place to discuss Cancer.  We are, as a nation, getting better at opening up about sensitive issues and I hope this conference will go a little way toward helping people affected by breast cancer finding answers, support and a gentle hug.

So that's it.  I've resigned from my day job.  I'm going to facilitate a Conference to be hosted in London for the UK and Europe in March 2011 and ensure that many charities work together to make this happen annually and for up to 1000 attendees at a time.  A big ask but one that I feel is necessary and one that I'm fortunate enough to be able to dedicate time to. 

And yes, I will be looking to you all for help...

I'm not sure where to start or with what or where today's entry is going to go.. bear with me.  Life's funny (not necessarily in a haha sort of funny either) but it's often that with every high there's an equal low.  In balance of the great news on Friday, there's that little voice in my head reminding me that I still have to be vigilant and also why am I so tired the whole time. 

 

My little voice keeps reminding me that a year ago I was spending this bank holiday weekend with friends talking about party planning to celebrate Mum's 70th birthday.  A year ago, I didn't have cancer and Mum was still alive; I'd never stayed overnight in hospital and I called Mum when I needed to talk something through; I'd never heard of Phyllodes and I believed I'd be annoying people until I was 78 years of age; Mum, although frail then, had an enormous amount of fight in her and was still able to drive myself and my brothers to distraction! 

 

You see after the good news of Friday, I guess most people think I should be able to get back to who I was before cancer (Anna BC).  I sometimes think I should be able to do that too... and just for a few moments I seem to be able to do it too.  Then I'm overcome by fear.  A fear that it hasn't really gone away, it's just hiding.  A fear that I haven't finished my life and want to rush off to complete it, just in case it ends sooner than 78.  A fear that in my haste I'll rush down the wrong path and don't have time to reconfigure my internal satnav.  A fear that I'm afraid.  A fear that there is no textbook to follow or rulebook to read.  I also feel guilty.  Guilty that I'm OK and that others struggle with metastases and of my sisters who have lost their life to this rare cancer.  So why me?   In my saner moments I know that I have to write that rulebook.. my own rulebook.  I have to follow whatever path I see before me and any 'mistakes' are just learning mechanisms for my next steps forward.  I know that Mum had had enough of being ill.  I know that she's now without pain or frustrated that her mind still worked when her body didn't.  I know that she's still with me guiding me, if only I could hear her voice. 

 

I know that I have to use these experiences to help others and to get information about Phyllodes out there into the public domain.  It may be rare but how come we get requests to join our Facebook Phyllodes group every week.  How come we were told that we're too young to get this and yet we have group members who are under 25 years of age?  How come there are now 80 of us in the group?  How come there's not more awareness amongst the medical profession?  How come I get emails from people who have googled Phyllodes and are seeking information for themselves, their friends and family?

 

I guess I still feel a bit broken and I'm not sure where or how to get it fixed.

 

But I can help others... first step friends, family - be breast aware... remember how this all started for me on the morning of Mum's funeral

"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"." 

Please be breast aware - work out what's your normal, regularly - How to check

I had my rescheduled appointment with the radiologist today.  How brilliant, I was seen at the appointed time and taken straight through for my appointment - although for once I was hoping for five minutes in the waiting room... I was desperate for a pee!! everytime I headed off to the toilet, I heard my name being called and would rush back to the nurses!  (there's no pleasing some people eh?).  And yes I did have to change into a very sexy gown and then was given an even more sexy gown to pretend we had a dressing-gown over the top.  We look like a right fashionable array of chicks in the waiting room and even though we're all so nervous, at least we laugh at our attire! 

 

I was quickly called into the cubicle and lie down to wait for the radiologist.  Then I'm smeared with jelly (oooo errrr) and the scans began.  I have to confess to being more than a little anxious as I lay there and my heart, I'm quite sure, was audible by the radiologist.  Even though I am meant to be getting my results in 2 weeks time from my consultant, the radiologist told me what she would say to my consultant - that she can't see anything of concern.  How cool is that?  Champers anyone? 

 

She did mention that there is was fluid over the original excision area but said this would eventually absorb into the tissue so there's no need for any drains or any more surgery.

 

So, good news and time to plan a future again...  Consultant's appointment in two weeks to get the results ;-) and then schedule in the next scan in 12 weeks time.

Had a lovely morning in the dentist chair and headed out to the hospital for my scans and appointment with my surgeon.  After the inevitable waiting, staring at the magazines that I'd already read at my previous appointments, I was taken through to the left consulting room (he has two consulting rooms on the go during the consulting days and a middle room in which paperwork and scans are assessed and completed between appointments). 

 

I could hear some muffled voices and hushed tones from the adjoining room, amongst them my consultant's voice.  20 minutes later he pops his head into my consulting room and says 'we can't find your scans'!  So I said I hadn't had any yet... that'd explain it!  Turns out I should have attended another appointment with the radiology team however I didn't receive an appointment letter.  But then again I didn't receive an appointment letter to see my consultant but knew that it was coming up so had called to see if there were any appointments booked for me and was only told about this one! 

 

However this did give me the opportunity to speak to my consultant and discuss the pain niggles and lump that I had felt.  He did a manual check and said they felt OK (errrr well of course they feel OK, they're MY boobs!) however he has suggested that I take primrose oil daily and also ordered a bi-lateral ultrasound scan, so they will check/scan both boobs.

I've learnt my lesson, I'll be calling the hospital in a couple of days to check what date/time my new radiology appointment is.  Gives me enough time to collate some 'newer' magazines to take into the waiting room - I guess it's one of the joys of cancer is that you get to visit your medical team often, therefore it's important that the waiting room has lots of new reading material so you can absorb your mind in media rather than worry about the appointments and tests you're waiting for. 

 

Serves me right for panicking about the scan though - ha blinking ha, I'll just have to do it all again...

OK, so for all the bravado and I'm OK positive noises... I'm a little lot nervous about my first 12 weekly check-up.  Sounds ridiculous to be so nervous and I wonder if some of my nerves are simply because of recent events.  I sort of hope that's all it is but I also know that there's still the pain and a new lump in the other breat - but hey that could be hormonal or something, right?  Or maybe I AM really a lumpy bumpy person and I didn't really notice before this all began.  You see, I can't help but wonder if I had been one of those very good girlies that check their breasts regularly and therefore know if something is abnormal early on, I might just know now if this is 'odd'. 

 

One thing I do know is tell your friends, family and whoever will listen to do so to check breasts regularly... How do I check?

My world has been shaken to the core today, two of my phyllodes sisters died last night both of them so young and beautiful and so much to give. 

Incredible to think that phyllodes can really take a hold so quickly Lynda had been in Atlanta in February at the Conference.  However after the journey, had felt so fatigued whilst she was there, we didn’t manage to meet up with her.  How can this happen?

So many of my support group are also reeling from this news.  I guess, like me, we rely on the little information we have from our medical teams and research that we are forced to do ourselves due to such little information.  We must cling to the information we find and through our support network remain resolute that this can’t happen and we can remain positive – but this happens...  and I’m left wondering how...

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell. ~Lance Armstrong

I’ll fight.  I’ll educate.  I’ll make sure that none of my Phyllodes lose their lives in vain.  I’ll also make sure that so far as I can find energy, resources and love, I will also ensure that there’s support and a shoulder to lean on when times are tough.  I’ll fight like hell... but first I need some recovery time of my own.

I feel like I've been on a rollercoaster again.. and those of you who know me, know that I'm not a fan of fair rides! 

 

It seems that with every high, there's a low.  With every smile, there's a grimace.  With every positive thought, there's a negative one.  With every step forward, there's a backward step.

 

Each of these instances are putting me to the test again.  I'm trying hard to believe the good stuff and ignore the bad; to support others diagnosed with phyllodes; to plan for a future, my future; to believe that I'm done with phyllodes, with no more surgery or treatment; to remember that everything happens for a reason and to use every experience for good.

 

This week I have been shocked that phyllodes has spread in some of my phyllodes sisters to other soft tissue areas.  One fo my team is in ICU and another checking into a hospice.  I'm not sure if I was lied to by the medics or they simply just don't know.  When will they really know something about this rare cancer and be able to find a cure.

 

Please pray for those diagnosed with phyllodes and particularly those with advanced or recurrent tumours.  I would like to believe that some comfort can be felt by our collectively supporting eachother.

It's been a while since I updated you... mostly because I'm finding it difficult to know where I am.  I don't know if I'm waiting for something to finish or something to begin but I feel lost.  It's difficult to explain and I've thought long and hard about it and found no answers.. yet.  Bear with me.  I am desperate to move forward but not sure where I want to go or what to do.  I KNOW that I want to get the conference on the go but am struggling to find a way to finance it (my time) and create the time to plan it properly..  I know that I want to get back to a social life that I've had before, to go to the theatre, opera, dinner, drinks, parties etc etc.. I know that I want to live in my own home again and to be surrounded by my possessions... I know that I want to be able to live for a single day without worrying about the cancer returning.. I know that I want a pain free day... I know that I want to feel confident and comfortable with my new body shape and image... I know that I want to stop crying... I know so much but don't know how to get there or who to ask for help...  I did however read an article to day that helped me realise that I'm not alone... Living Beyond Breast Cancer... I'm OK and I know that I need to go through this to become a better fulfilled and happy person but it's hard...

6^th March 2010 – Time

I’ve been conscious that I’ve still so much to sort and organise relating to Mum’s estate and possessions, not helped that I live in a small country cottage which is now creaking at the seams with boxes and paperwork.  So my job this weekend is to get things organised.  Sorry BigI for cancelling weekend plans at short notice but it’s been getting me down a bit as I want to move forward and feel that I’m being pulled back.

I also needed time to reflect on all that I learnt last weekend and all that it taught me.  I’ve also been reminded that I don’t have Mum around to tell about last weekend.. I just know she’d have been excited that I’m going to put together a conference for the UK and Europe – in fact I know she’d have her address books out and probably have already made some calls before I’d even finished telling her about my plans!  Miss you Mum.

I’m still absolutely driven that we need one of these Conferences in the UK and available to our friends in Europe... so here goes... if you’re willing to help, in anyway, please contact me, cos this is GOING to happen.

5^th March 2010 – Follow up appointments

As you know I’ve been wondering when I’ll get my appointment through for my first 12 week check.  Every whinge and pain reminds me that I’m waiting and me, being me, pushes it to the back of my mind with a ‘it’s just the breast tissue memory and scar healing’ – but even if it is, I’d like to know for sure. 

So I called the hospital to find out when the 12 weeks runs from;  my scans, surgery No. 1, surgery No. 2?  The team I spoke to didn’t know the answer but did confirm that I had an appointment in the diary for 21^st April.  I’m not sure why I haven’t received any notification though but I guess that’ll mean that they take the 12 weeks from the surgical follow up appointment. 

About 10 minutes after I hung up from my hospital call, my GP called me.   I know I’ve told you before that I have the best GP in the whole world... I really do!  He said he knew what my medical notes said but he wanted to check how I was doing in myself.  How I’m coping.  What an angel. 

Strange though that he should call when I’ve been anxious about my hospital appointment...

1 March 2010 – Reflections

So what did I learn?

• As a cancer patient or as a cancer survivor, I’m not alone, unless I want to be.
• I AM in control of my life, my health and my future.
• If I need help or support, for any reason and at any time, I should ask for it.
• Support and help can be found in the oddest of places – open your eyes
• Laugh... often.
• Don’t sweat the small stuff.
• I’ll never be the same person I was before cancer but that’s something to be proud of and to embrace.
• Use everything in life for good.  Learn from it, share with others and believe that it’s all for a reason and better purpose.
• What I look like on the outside does NOT reflect who I am on the inside.
• When I meet someone to share my life with, I’ll be ready to share my scars.
• I share my experiences with some truly wonderful people and I’m honoured to do so.
• Live every day, every hour, every minute and every second.

 

And did attending the Conference answer my questions that I had before attending?

• How to realise I have a future and not just plan for the now.

• How to feel comfortable with my new body image and feel that although I look different and am scarred that I can accept the new me... and maybe one day be able to be OK with a new partner seeing me too.

• How to use my experiences to help others without dwelling on my personal issues.

• How to eat better and be healthier and use natural foods to manage and keep cancer away.

• How to be an inspiration to others both in my attitude, outgoing and learnings.

Hell yeah!  Thank you to each and every one of you who helped me get there and support my insane need to travel so far for answers.  Financially, emotionally or physically.  Love you all. xxx

Remember: I’m a person living with cancer NOT dying from it.

28 February 2010 – Last day of Conference and I want to max out on information

8am – Yoga – Yes you did read that right.. I was up and out and in a yoga class for an 8am start!  Along with about 50 other people from the Conference.  The little room was packed and as we stretched and posed we all became very close friends!  

9am – Quick shower and down to the exhibitors hall to grab a cup of coffee before the next workshop.  The other girls were leaving at 11am to fly back to their destinations  and headed out with Jen to get some breakfast.  Although some of the ladies were a little worse for wear and hadn’t yet made it out of bed after their 6am finish time in the karaoke bar.  You know some people might frown upon partying hard at the conference, but for a lot of attendees they can really let their hair down (or take off their wigs) and just be themselves, laugh at themselves, at our situation and be amongst friends.  That kinship is more important, sometimes, than anything else and the conference is a way to network with people who are travelling this journey with you.

10am – Workshop Session Four - Body Image: Breaking Through the Mirror - Lillie D Shockney, RN, BS, MAS

 

I don’t need to tell you why I wanted to attend this workshop!

Lillie Shockney was an awesome speaker, within minutes she had us all thinking, crying or laughing... or for some, all three and it just made sense... so forgive me if I repeat bits and pieces but I think it may help others too.  She is a breast cancer survivor herself but was involved as a breast cancer nurse before diagnosis.  She has many tales about people and situations that shock and then bring you into fits of laughter as she tells of prosthetics popping out on golf courses and board rooms.  I can understand why she is involved in so many educational projects in the US and overseas.

Lillie Shockney is also involved in a project in the Arabia regarding education and medicine for young women.  The average age of diagnosis is only 34 and usually death within one year of diagnosis.  Scary stuff and it’s no surprise that breast cancer is referred to as ‘Death Fate’.

How we see ourselves is often very different to how we perceive others see us.  Think about it some more...

When we hear those four little words “You have breast cancer”, we instantly are fearful.  We’re fearful of losing our lives, of losing a breast (part of whole), of losing hair and also of losing our mate, of gaining weight, losing libido, depression, preoccupation of fear of recurrence and needing to find our ‘new normal’.  And it all happens so quickly.

She said that she urges women to seek solace in humour through the rough stuff.  To label the surgery ‘transformation surgery’ as it really is and does transform your body and mind. 

Celebrate that you go from being a breast cancer patient/victim to a breast cancer survivor.  Doesn’t that sound better?

Ms Shockney also mentioned that she’d known cases where survivors experienced pain or phantom limb sensation after surgery to remove the breast – but she said that with some survivors they’d been able to find a spot on the body that meant the sensation disappeared!

Redefine your intimacy, talk it all through with your partner and ensure that they are part of the process.  Often when we’re unable to be sexually close, simply holding hands conveys what you’re feeling.

Partners often become owner occupiers for a while...

Oh and if you’re having chemo, organise a little party with your closest friends and have a coming out party for your hair before you start.

I think for the most part, for me, this workshop smacked me in the face and told me not to worry about it all so much.  When I meet the right person, it won’t matter.  Should I need further surgery or treatment, learn to laugh at the little stuff and the big laughs will follow.  Find humour in the hardest of times.  And rather than feeling that any change is a bad change, embrace the new chapter of my life and use the learnings.

11.45am – Don’t go - Sadly the time had come that some of Team Phyllodes had to head off to get flights home.  I rushed up to the lobby after the workshop to find them all there, long faces (and a few hangovers).  I was sooo sorry to see the first go, particularly Trish.  She was the first person who retrieved me from cyberspace when I was searching for answers and someone, anyone, to talk to.  The difference this made to me, my discovery, my recovery and now... I can’t put into words.  The relief to know that I wasn’t alone and I could ask questions and she quickly put a shout-out for other Phyllodes survivors to friend me and I really felt that having felt so alone I suddenly had sisters out there who could pick me up and lend me a shoulder to cry on when I needed it.  Since then I’ve tried hard to ensure that no one feels alone with this ‘rare’ illness – we’re not THAT rare (but we are of course, unique!)!  So having this opportunity to meet and hug Trish and some of the others from cyberspace was something I will cherish forever.

12.15 – Closing Plenary: Resigning as General Manager of the Universe: Taking Control of your Own Health and Life - Kim Carlos     

Kim opened her speech with words that resonated loudly with me:

“When you hear these four words “You have breast cancer”, you instantly feel alone.  But I’ve learnt that I’m NOT”

She told of her story, of how she now uses every experience and learning to ensure that at the very least the message to women AND men, gets round, check your breasts.  Don’t leave it to chance, you are your own medic... and remember that ALL the people at the conference were told at some stage ‘don’t worry, you’re too young to have breast cancer’... ooooh how wrong they are!  In the UK we are lucky to get mammograms at 40, in the US they don’t get mammograms until they’re 50 and everyone at the conference was under 45 years of age! 

She went on to tell of her journey with her new friends, of times they laughed, times they cried and times that should probably be confined to the conference... but you can read about it in their book “Nordies’ at Noon” http://www.nordiesatnoon.com/authors.html

Like so many of the speakers, survivors and hosts, Kim was keen to learn from her experiences and to use this for something better (and also to get away with a few things too) and Kim’s top 10 were:

10.  I could say NO to the things I didn’t want to do and not feel guilty.

9.   I could have a messy house and it was OK.

8.   It was easier to raise money for good causes... a bald head helps!

7.   No shaving, no razors, no waxing, no in-growing hairs etc.

6.   Had a tummy tuck as part of her reconstruction surgery.

5.   Got a new boob and a breast lift... for free!

4.   Meals bought to her by friends and family which meant no cooking.

3.   There was no such thing as a bad hair day.

2.   Anything that didn’t quite go right, she could blame on “chemo brain”.

1.   It made Kim realise the wonderful gift of life and made her cherish family, friends and life.

 

Kim’s recipe for survivorship

S - Support & Survivors and co-survivors.

U – Uncertainty that you will fill your life.

R – Resigning as general manager of the universe.  You don’t have to be in control.  You don’t have to be one that everyone comes to.  Take care of yourself and let others take care of the universe.  You can ask for help and you can accept the help given/offered.

V – Venture.  Take a risk.  Do something you’d otherwise never give a go.  You can never fail, just learn and experience.  You never regret something you did, just those things you didn’t do.

I – Information.  What do you do with all the information and learnings you’ve got from this experience.  Use them.  Empower yourself, do something with it, use it!  Become an advocate.  “Be an active participant in your care”.

V – Valuing each and every day.  (What are the things in YOUR life that you value?  Do them).

O – Optimism. 

R – Refusing to give up.  And SURVIVING and THRIVING.

 

12:45 - 10^th Anniversary Cupcake Celebration and Closing Remarks from LBBC and YSC

As the Conference closed I was incredibly aware of the amount of information, companionship and warmth that I had gained from the weekend... Somehow I was going to be thankful for the cosy atmosphere of the BA flight home to think through what it’s meant to me.

1:30 – After more sad goodbyes in the lobby, Jen and I headed out into the chilly Atlanta sunshine and were whisked off to Sue’s house for an American brunch.  Yummy pancakes, bacon, strawberries, maple syrup, eggs etc.  Awesome meal and fun walk in the afternoon with Sue, Paul, Jen and Sue’s children before Paul drove me to the airport and my long flight home. 

If you can imagine always being told that you’ve a rare cancer and you’ve struggled finding anyone with the same thing in the country you live in or information to hand about the best course of treatment or the future prognosis... but then going from feeling isolated to meeting people online but wanting to chat easily about Phyllodes or hug someone who’s in the same boat and THEN being at this Conference with people who are also the same as you with the same rare cancer who laugh in the same way (mostly at Phyllodes ;-) ) and are real and inspiring and alive.

In 30 minutes we start the first of the sessions of the Conference... Agenda

Midday and Team Phyllodes met in the hotel lobby and headed eagerly downstairs to register and discover what the Conference was all about.  After completing the inevitable paperwork, we were presented with a bag of Conference goodies... you know a huge bag of books, advertisements, guides and gifts from exhibitors – a mightily heavy bundle it was too (sort of ironic since many attendees would have been advised not to carry heavy bags around!).   

We then “lei’d” each other with the appropriate coloured lei to celebrate our survivorship.   

White: Diagnosis less than 1 year ago; Green: Diagnosis 1-5 years ago; Purple: Diagnosis 6-9 years ago; Pink: Diagnosis 10 years ago or longer; Orange: Diagnosed with advanced (metastatic) breast cancer; Red: At high risk; Yellow: Caregiver, family member or friend; Blue: Healthcare professional.

This simple colour coding helped us all identify where our fellow survivors were in their journey but also symbolically enabled us to feel part of a much larger support network.

Next was a tour of the Exhibitors Hall.  The Hall was filled with charities, support network organisations, research companies and hospitals etc together with corporate exhibitors who sell critical products and provide services to breast cancer survivors such as wigs, cosmetics, underwear, lymphedema sleeves, books  and also promotional fund raising goods.  During the weekend, I wandered through the Hall many times asking questions of exhibitors, picking up leaflets and information and learning so much by also listening to others asking questions and receiving answers.  Once again I was struck by the amount of support and advice available to survivors but also aware that this kind of information is perhaps difficult to source for those without the internet or access to this event in the US.

My first workshop was “We are What We Eat: Fight Cancer One Meal at a Time” presented by Shayna Komar and Chef Nancy Waldeck.    www.foodnews.org  www.tasteandsavor.com www.livingandeatingwell.com

I thought I had an idea of healthy eating and I thought I knew how to cook healthily but golly I learnt heaps of good tips from this workshop.  So, I’m going to tell you it all (or as much as I can) and hope that some of this is useful to you in your everyday life or if you’re reading this as a cancer survivor, this may help you become even healthier to fight the little blighter! 

Weight loss  - I also learned (or perhaps had confirmed) that weight loss is important – a lot of women diagnosed with cancer are overweight... although it can’t be proven that we wouldn’t have had cancer in any event, I like to think that I can reduce my chances of a recurrence or metastases by reducing my weight – and have more energy into the bargain!

Low fat diet – A low fat diet has many health aspects but for those breast cancer survivors who are PR/ER negative, the medical teams have proven that there is a lower percentage of recurrence for those survivors who have a low fat diet.

Vegetable sprouts rather than the whole veg – ½ cup of the sprouting vegetable = 1.5 cups of whole veg, so try to choose young sprouting veg to get more nutritional benefit.

Reducing inflammation and increasing immune function:

Deeper the colour = higher antioxidant content. 

Quercin - found in red onion, cherries, citrus fruit, green tea and red grapes.

Allicin – Garlic contains a good source, so try to incorporate this every day.

Green Tea – Rather than drinking endless cups of green tea, you can cook your vegetables or pasta in green tea to increase your intake of this valuable antioxidant.  Also suggested anything cooked with water, add a little green tea!

Water – Drink lots to help flush your system.

Beta-Carotene rich foods – Add some of these to your diet weekly.  Good sources are carrots, sweet potato, squash, cantaloupe and mango.

Eat smaller mini meals – particularly when undergoing treatment of any kind... and make sure you include some fat ie avocado, nuts or olive oil.

Reduce – wheat, dairy and sugar

Power foods – Greens, Kale, Sprouts, Onions, Tomato, Pumpkin, Squash, Sweet Potato, Oils, Healthy Fat Fish, Berries, Beans, Garlic, Probiotics, Spices, Herbs, Tea, Cruciferous vegetables, fresh turmeric and fresh ginger – so if you’re feeling like you need some good stuff, try to include a few of these extra in your diet.

Cleanse – Drink lemon and ginger in hot water as an alternative to coffee or tea.

Chocolate – is GOOD for you!  Well a little bit and some chocolate.  Look at the label and choose only the chocolate with over 60% cocoa content.  Also be aware that any labelling mentioning ‘processed with alkali’ or ‘dutch processed’ means all the good stuff has gone from the bar, so avoid.  Also avoid if ‘sugar’ is listed before the cocao content... oh and just in case you get carried away, the antioxidant benefits are only if you have no more than 1oz a day!  But enjoy.

Nuts – Brazil nuts contain a good source of selenium, Almonds a good source of ‘good fat’ and Walnuts a good source of omega fatty acids.  All nutrients that help fight breast cancer, so if you want to nibble, nibble on one of these nuts!

Almond Butter – Instead of peanut butter or normal butter on your bread, use almond butter.

Almond Milk  - Make yourself some almond milk and use this in your cooking or with your porridge in the morning.

Greek Yoghurt – Good greek yoghurt is also a good source of protein – and you can get this in a low fat variety too!

Salt – Reduce your salt intake by sometimes swapping the salt (even in your cooking) for a little citrus zest... it tastes the same and is better for you!

Intensify flavours and goodness of some veg – Salt and stand water based vegetables such as tomatoes and cucumber.  Water will drain from the veg leaving you with a much more intense flavour in the veg but without losing any goodness.

Pomegranate molasses – Use a pomegranate molasses as a sweetener instead of any sugars.  I think in the UK this may only be attainable from health food shops and small specialist food stores but the benefits of pomegranate are huge and of course we’re also reducing our sugar intake!

Cinnamon – Add a pinch or so of cinnamon to your coffee/porridge etc – it’s good for you!

Soy – The controversial subject of soy.  If you’ve had soy in your diet your whole life, carry on and increase your intake a little.  However if like me, you’ve only dabbled with the odd bit of soy or you have a hormone related cancer, (with care) we’re advised to include no more than 3 soy foods per week to our diet.  Miso, edamame and tofu are fabulous sources.

Wine – Hmmmm I didn’t get quite the right answer I wanted... err look at the label and educate yourself about what you’re drinking and ask your oncologist!  Red wine is better than white but limited amounts.... errr 4-5oz glass per day.  L

So, how to do it:

-          Get in to the kitchen and cook

-          Read the labels when you’re in the supermarket

-          Get fresh food from markets or direct from the farm

-          Choose organic where possible however freshness must take precedence

-          Skip sugar and keep to natural sugars wherever possible

-          Enjoy the food and savour the tastes

-          Eat slower

-          Read up and take advice.   Some websites at the top of this entry too.

Nutritional Rules to Live by:

1.  Come back to earth and think about what you’re eating.
2. Eat breakfast.
3. Eat smaller portions.
4. Stay hydrated.
5. Include a lean protein to your diet (beans or nuts).
6. Choose foods rich in fibre.
7. Look at your food first and then add supplements to your diet, if needed and advised. 
8. Talk to someone knowledgeable about integrating the right foods with any medication.
9. Colour your plate... remember a good colouring means you’re getting different nutrients.
10. Get rest.

I hope you find the above as interesting as I did... oh and there’s recipes and tips on their websites too.

Group Photo

Late afternoon we were gathered around the pool for the survivors’ group photos.  The first photo was for all survivors.  There were over 900 participants at the Conference – it still shocks me that there are so many of us affected by cancer and more to the point, that all attendees were ‘young’ ie under 45 years of age.  I know that so many people say that disease and illness doesn’t care about your age, sexuality or the colour of your skin but it sucks!  There were ‘children’ amongst us – teenage girls should be excited about their new buds growing and making them into beautiful young women, NOT finding out they have breast cancer.  BUT we stood, side by side, giggling and laughing, shuffling into position, supporting each other and chatting amongst ourselves whilst those of us in the front row also tried desperately not to fall into the pool! 

There was also an ‘international attendee’ photograph taken.  I represented the UK whilst 7 others made up the international group from Brazil, Germany, Turkey and Canada.

Hard Rock Cafe

We decided to head out to the Hard Rock Cafe for a drink before joining another 85 participants for dinner at the Hard Rock.  Team Phyllodes (and honorary guests) tucked into a cocktail or two and before long we needed dinner.... and the other 85 or so weren’t yet there!  Ooops we dined in our group – hey the prosthetic boob had been bought out and the wigs were off – much to the sniggers of our group and horror of other drinkers, we needed to eat!  You know what though, the horrorified looks came from a group of balding men behind us when a wig was removed... well that was until we pointed out that at least our sista's hair would grow back!  OK so we all ended up friends in the bar but for a few seconds I realised that you really can embarrass an American man!

PJ Party with Pure Romance

Yes you read correctly, a pyjama party with adult toys!  Here goes, I may as well shock you all a little more... first I mentioned the C word out LOUD (errr that's Cancer!) and now I've mentioned adult toys! 

We all got changed into our nightwear (me in an all-in-one) sleepsuit that I’d had made with my cancer forum name on it) and went downstairs to one of the bigger conference rooms.  For many this may seem trite and silly but by having a good ‘slightly outrageous’ fun time hosted by Pure Romance on the stage, many attendees were able to talk freely about the side affects of chemo, radiation and surgery on their young bodies.  Imagine going through or being post-menopause at the age of 24.  Imagine a relationship where you don’t want to be seen or feel inadequate due to the side affects.  Although most survivors need intimacy more than the sexual act itself, it’s often hard to communicate this to partners and some relationships are strained or breakdown because of this. 

By making light of the situation, giggling and laughing with fellow survivors and understanding that actually what you’re going through is quite normal.  There ARE ways of moving forward and retaining that intimacy by finding a way to talk, feel and also by using products and toys..  but without any prudishness.   Hey and it’s not all about the man having to have be an owner operator for a long while!

 

I’ll leave you, for today, with a quote from the Conference that sums up just how much attending this Conference and being with fellow survivors (in particular Jenny and Team Phyllodes) has meant to me...

“If ever there is tomorrow when we’re not together... there is something you must always remember... you are braver than you believe, stronger than you seem, and smarter than you think... but the most important thing is, even if we’re apart... I’ll always be with you”  (Winnie the Pooh).

I’m not sure if it’s jetlag or the final bottle of wine that I shared with, my long-lost bezzie mate, Paul last night but I’m having difficulty getting out of bed. 

Paul (who lives in Atlanta) collected me from the airport (which if you’ve even flown through ATL you’ll understand is a ‘mare for security) and after checking in and dumping my bags we headed out for dinner.  In ATL time, I was back home and in bed by 11pm... err however it was 6am UK time – hey maybe we were just remembering the ‘good old days’ when we used to party!

Most of the attendees arrived late afternoon and I have shopping to do (for others!) so headed out into Atlanta and brave as brave can be took their version of the metro uptown to a huge shopping mall.   Hey in the UK we think Westfield is big!  Successful shopping mission (for others!) and managed to find my way home too... she’s goooood!

Three of my Phyllodes sisters arrived in the afternoon and we met up for dinner.  I can’t tell you how truly wonderful it is to meet some of the ladies who really got me through some rough times, albeit over the internet.  It was wonderful to give them a hug and then over dinner for all of us to talk frankly about our experiences, how and what we’ve discovered about Phyllodes and managed operations, treatments and metastases.  But the most important part is just that we’re all so positive and upbeat about life and living it... oh boy we laughed lots last night.  Another of my sisters arrived late last night and joined us for a final drink before crashing in my room.

24 February 2010 – Enroute

I’m surprised at how badly I slept last night.  I’m obviously more anxious about this trip than I’m letting on... even to myself!

There’s been such a lot of expectation, by me, about the Conference, to answer questions, get reassurances, share and listen to survivors’ stories, learn more about living with cancer and attending workshops and seminars.

For me, I want to learn a million things but the main few are:

I’m also acutely aware at how incredibly blessed I am to have been able to attend this Conference.  From learning about it’s existence via new and wonderful Phyllodes sisters that I’ve met online, to friends’ assistance with the cost of the trip, to the support from so many known and unknown people who read my journey online and send supportive messages.

 

I believe that I’m the only attendee from the UK - they'll be able to spot me, I'll be the only one thinking its summer and behaving with a little British reserve (NOT)!

 

I’m also aware that this sort of event sets out (although I may revise that after attending) to be an invaluable meeting for survivors of breast cancers, allowing us to be at ease with our queries, questions and concerns and share our learnings with others who have or are going through the same things.  Suddenly, we’re not alone any more - and I truly can't express how much that simple statement means.

 

It would be incredible if we could make this event accessible to all... wherever they live geographically... but cost of travel and accommodation are often prohibitive... BUT right now, I’m fired up to believe that this sort of event to be hosted in the UK or Europe would be amazing and I’d love love love to be part of, or instrumental in, organising this event in the UK.  I know that there’s a need for it... so who’s going to help me do it?

I wonder if I'm placing too much emphasis in finding the answers at the Conference?  My mind wanders off to a place that tells me that US manages Phyllodes in a completely different way to my experience in the UK.  Will my attendance in fact confuse me further about my medical and diagnosis prognosis?  But perhaps there will be some clarity.  And will I feel able to ask the questions that I have without feeling daft?  Ooooh help!

It's with trepidation and excitement that I write this quick update.  Only 4 days to go until the start of the Conference in Atlanta and, apart from the long flight to the US, I'm so looking forward to the Conference.  I'm looking forward to meeting and having a hug with the Phyllodes ladies that have been such a strength and inspiration to me over the past few months.  I'm looking forward to meeting up with a couple of old friends, one who lives in Atlanta and another who will be attending the Conference too.  I'm looking forwad to learning so much more from others about managing their lives and moving on.  I'm looking forward to the Conference for soooo many different reasons.

 

As you know from my story, I still have so many questions that I think about often, to do with being a survivor of Cancer and someone that hasn't been told that I've got the all clear or someone who doesn't know what her future holds - or whether she has a future.  Last weekend I attended an NLP conference and one of the 'tasks' that we did early in the weekend was setting goals in our future - I went from my 'relatively' usual positive stance to someone that questioned if she had a future and when using an NLP technique could see only a black space when attempting to see into her future. 

 

This affected me hugely and I nearly turned round and came home writing it off as a bad job.. but I didn't.  By the end of the weekend, I was able to see a future and importantly, a future that was positive, healthy, wealthy, fun and something to run towards and embrace. This was even when the pain was quite painful during the weekend... it always seems worst when I'm tired, cold or doing too much and the Conference was, as it should be,  full-on!

 

So here goes... I DO have lots of questions and I DO have concerns about what I look like now and I DO wonder how I would handle a mastectomy, should the Phyllodes return... but what I do know is that if I attend the Conference and am ferociously curious about meeting people and learning from experiences, advice and attitude, I can draw only positives from my attendance and flourish from all that I am part of in this journey.

I figured it was about time I gave you a little update. 

 

For the most part I've felt like a million dollars.  Its difficult to explain how I felt that a huge weight had been lifted once I had received answers to my questions and queries and made the decision not to do anything else.  When I've felt energised and rested it's felt great, I've felt positive and wanted to move forward with my life AND grateful for having a life.  I'm enjoying getting in touch and meeting up with friends again.

 

However when I'm tired or the niggling pain is a little more intense... or when I wonder how I'm going to move forward with my life when I don't feel assured that I'm 'safe' yet. 

 

How can I plan ahead or book anything in the future when I don't know what will happen?  Will the niggling pains be there forever to remind me what has happened?  Or are they just a precursor to the cancer returning? 

How do people deal with it?  Do they just take day by day and hope that tomorrow is better than yesterday?  Smile hard and hope that the good feeling people get when they see a smile rubs back onto me.  When I was younger I don't remember being told that growing up was tough... not like this... can I be 4 again please?

 

16 days until the Conference in Atlanta - I hope I find some answers there... maybe others who are going through/have gone through this will be able to help me.

13 January 2010 - It's all over... for now - champagne please...

After a frustrating 2.5hr school run to drop off Millie's children in the snow and ice, we decided it would be sensible if I went to the hospital alone so that Millie would be able to collect them from schools on time.  As it turned out the journey was easier than usual and, for the most part, the roads clear of snow/ice/people!

My appointment with my surgeon and Macmillan nurse was on time, so far so good.  After a quick examination my surgeon confirmed that the lump and pains were associated with the area that had been stitched internally and externally and will dissipate in time.  He also examined my left breast and glands to set my mind at rest about the other pains.

Once dressed, we sat in the consultation room comfortably and my surgeon asked me 'what do you want to do next?   Surgery, Radiation, Re-examination of the pathology...?? ' 

'Somewhat unusual' the Macmillan nurse's eyebrows said and my surgeon explained to her that he knew I had been doing research, asking questions and speaking with other Phyllodes survivors about my case together with yesterday's consultation.  I told him of my decisions that I had made before, during and after yesterday's consultation which in summary was that I didn't want any other surgery or treatment at this time.  I was happy that my queries and concerns had been answered.  I was also happy that the pains were manageable now that I knew it wasn't a recurrence.  He reconfirmed that should I have any concerns at all in the future or any new questions, I should call or make an appointment immediately.  This once again assured me that I wasn't going to be left worrying but am getting the very best treatment and care.

We also agreed the follow up schedule, as discussed the day before, would be every three months for the first year, six monthly for the second year and annually thereafter.

One question that I know will come up and one that I don't want to fall off the radar is the evening up of my two boobs.  After the two surgeries I have been left with scarring and a smaller right breast, although given what I could have been left with, I'm very lucky that the difference is not drastic and can be addressed without surgery.  However I don't want to do anything about it now and indeed if my own self image is better may decide not to do anything about it, ever.  I know that I need to lose a lot of weight and that this weight loss may make the difference more or even less obvious (women often lose weight from their breasts but it may not be evenly lost due to the surgery).  So my job - I need to lose weight and get myself to a 'stable' weight.  At that point I may then be asking the surgical team what options are available to me to even out my right and left breasts.  Until then I shall be satisfied with the assistance of Rigby & Peller's magical inserts and, perhaps, some custom made lingerie to address the natural imbalance.  But for now, I'm happy that the onus is on me and I don't want surgery until I've done that.  I would hate to have surgery once and then lose weight to need surgery again.

For now I need to look ahead, to plan, to schedule, to organise my life.  I need to work out if I will have difficulties with mortgages, life policies, financial planning etc and how I manage this.  I also need to come to terms with my new body image and how this will affect my emotional future.  I'm hoping that meeting others at the Atlanta Conference I will be able to understand how others have overcome these issues too.  So here goes... I will only update this website if I have more information or my healthy position changes or in the run up to the Conference... Well, I've got my life to restart and get back on track, so forgive me if I pick up the phone, turn up on your doorstep, push you into going out or coming round but I've got things to do...

But before I go for now... thank you for your support, emails, calls and positive vibes.  They obviously worked and I know I couldn't have gone through this journey with so few minor blips, without you all.  Thank you.

12 January 2010 - Questions and Answers

Today I'm anxious and I'm quite sure my blood pressure is through the roof.  I can't help but wonder if the pathology is in and if I'm going to meet with a new consultant to hear results that I don't want to hear.  I know that my head has been in a terrible place this past few weeks but is my head right?  I left heaps of time to get to the hospital and arrived in South Kensington over an hour and a half before the appointment was due. 

South Kensington/Chelsea was a little bit of my stomping ground many years ago and a lot of stories/memories (fortunately) have been long forgotten about those times.  I wandered slowly towards the Royal Marsden past Pond Place, where I had my 25th birthday party in a basement bar - what a fantastic night (remember? - Jax/Melissa/Mark/J.  Sadly the bar is long closed and in fact there are weeds trailing down the steps and if it hadn't been freezing and icy, I'm quite sure I would have heard the tumble weed roll down the roadway (instead of the 'Oi - I fink it's closed' from the workman the other side of the road!).  I looked back up the road and remember evenings at The Collection or lunches at PJs with the med teams of the Chelsea & Westminster on Sundays... ooh so many good times.  

I haven't mooched around this area of years and it was with mixed feelings whilst looking back upon some wonderful times/memories and looking/hoping that there's a future which will enable me to create more wonderful memories. 

After a short wait in the hospital waiting area of the 'Wallace Wing' (errr did they name it in anticipation of my arrival?), I was taken into a consulting room and left to strip off to my waist and put on one of those gorgeously sexy hospital gowns! After an examination I was told by this Snr Consultant that she was extremely impressed with my surgeon's handiwork and was satisfied from this 'manual' exam that there was no worrying lumps or bumps.  She did also confirm my anxiety about there being a difference in size after the two operations but that could be fixed at a later stage, if I wanted.

She then asked what questions I had and looked a little askance when I pulled out my folder and notebook!  When I apologised about having the questions it was wonderful to hear her say that I should ask questions and should make sure that I have the answers and should research Phyllodes tumours and should take control and own my health.  Having a rare cancer has taught me that I cannot sit back and take comfort in previous cases or well-trodden medical  surgeries or treatment paths - there are none.

So for other Phyllodes survivors the answers I got were:

Sufficient clear margins - There is currently no recommended measurement of sufficient clear margins however the margins that were taken she believes are adequate.  4mm with a clean surgical removal is sufficient.

Hormone negative receptors, do they have any bearings on whether a recurrence will appear? -  I discussed that I had read that there may be a link between survivors with negative hormone receptors (ER-/PR-) being at higher risk of a Phyllodes tumours.  My consultant advised that, for Phyllodes, she is unaware in the UK of this being researched and pathology is not tested for hormone receptors.  However she will pass this information to the research teams and suggest that any Phyllodes pathology is tested to see if there may be a link. (There are links with other breast cancers and hormone receptors)

Pathology - I neglected to ask if my pathology had in fact been re-examined however am satisfied that should they have felt it necessary they would indeed have ensured it had been.

Stabbing/pinching pains, why? - My concern was that the pains I've been experiencing are sharp and similar to the pains I was getting when I had the tumour (although the skin isn't hot to the touch now).  I was worried, of course, that the tumour was back and growing again.  Or that I may, as other Phyllodes sister had been told that I had 'Mondor's Disease' which although sounds scary will pass in time with massage and pain relief.  However the consultant told me something that I really didn't know - breast tissue is similar to a memory foam mattress (my interpretation not hers!).  Apparently breast tissue will remember what a feeling/pain was like and mimic this at a later stage.  In my instance where the tissue is reshuffling and the scar tissue shrinking, the most recent memory feeling it has is the pain I had during the tumour growing and therefore has learnt to replicate that pain.  Apparently women who breastfeed can often experience the feeling of breastfeeding many years later.  For me and I'm sure others who have undergone soft tissue surgery, it's worth remembering and although it doesn't negate the need for vigilance to check for recurrence, it may be just remembering the sensation of pain.

Pain also in the left breast - The consultant was able to assure me that there were no lumps or bumps to be concerned by (from the manual examination) and perhaps the pain is simply hormonal or the left breast has gone out in sympathy with the right!

Recurrence - We discussed the potential of a recurrence given that I had a malignant Phyllodes tumour.  What are the odds and are there any details on how long I may have before a recurrence occurs.  The consultant said that the first two years were the highest risk and therefore we would ensure that there was an adequate follow up program in place to pick up any oddities quickly and also put my mind at rest that I'm not waiting long.  She also assured me that should I feel worried by pain, lumps or generally, then I should call them immediately and would be bought in for consultations and testing urgently.

Radiation - We discussed further my thoughts on pursuing radiation therapy at this point.  Since my original request for this to be considered I have researched this further and also spoken at length with the radiation consultant. 

One very interesting point that I had not been aware of is that radiation on a soft tissue sarcoma may induce further recurrence.  There are no stats for this but it is believed to be a concern therefore I'm now not convinced that this really would give me a 20% better chance.  I have chosen to leave radiation until I really need it and to consider further surgery, more drastic surgery, before any radiation is undertaken.  Grading of malignancy - In the US Phyllodes tumours are graded, in the same way that other breast cancers are graded, however in the UK I have found no grading or staging.  I asked what grade/stage my malignant Phyllodes tumour was and if this classification may have any bearing on any potential recurrence.  I was told that grading/staging is not done in the UK.

Metastasing - In the UK they believe that there is a very low risk of a Phyllodes tumour metastasing to other soft tissue areas of the body.  Sadly, I do know Phyllodes survivors in the US who have cancers in other areas however wonder if these cancers are related to metastasing.  With the regular checkups and me being vigilant I am hopeful that this will not affect me.

Tamoxifen - There is a school of thought that Tamoxifen may assist with Phyllodes survivors (or other soft tissue sarcomas) to reduce the risk of recurrence.  This is a drug used regularly for breast cancer survivors.  We discussed this as a potential option for treatment for me however there are a number of side affects including blood related issues.  I weighed up the potential reduced odds of recurrence -v- my concerns about having any more blood clots and decided that the risk, for me, was too high to try for a maybe.  However for others this may be of interest.

Is 10/mm2 mitotic count high? - The mitotic count in the pathology of the first excision indicated that it was 10/mm2.  My research identified that this was high and in data received from Australia indicates that once again this may be an indicator of high chance of recurrence or early mortality.  I was assured that this wasn't the case as far as the UK are aware and satisfied that, once again, with close surveillance and regular checkups I wasn't going to let it either!

Did the reconstruction during surgery 1 create a new network for the Phyllodes tentacles? - In short No.  It was the right decision by my surgeon and has meant that the cosmesis is retained as best as possible.

Mastectomy or more surgery - No further surgery is required at this time (unless I chose an elective mastectomy).  However should there be a recurrence or any concern about my future prognosis then I should, as well as I can, prepare myself for a mastectomy.  I was 'warned' that if anything was discovered I would be whipped in and my breast whipped off before I could blink, therefore it is advisable for me to consider what I would do, how I would handle it etc etc and to be prepared.  I believe that I've done all the preparation I can do until it actually happens.

NHS classifications for Phyllodes - I discussed my concern that the NHS does not classify Phyllodes within its database and more particularly that we surely can't confidently say this is a rare cancer or doesn't affect many in the UK if there's no way of recording or reporting on it. I mentioned that I had established the coding in the International Classification of Diseases and wondered if/how I go about getting it considered for inclusion in the NHS coding.  My consultant agreed that this was a ridiculous situation and would do her best to ensure that the NHS were provided with the correct coding and include this as soon as possible.  I will, of course, ensure that my medical notes are updated to reflect the code as soon as it is within the NHS database.

 

M9020/0 - Benign - D24
M9020/1 - NOS - D48-6
M9020/3 - Malignant - C50-

 

I was also able to advise the consultant that I was to attend the Conference in Atlanta and she was keen that I should feed back to her anything I felt of interest/research/investigation from the Conference or my own research/enquiries.  I would like to think that I can bring back to the UK information from the US and that this information is disseminated to medical staff so that the awareness of Phyllodes is raised.  If more Phyllodes tumours were diagnosed quickly, patients may only need one surgery (instead of the standard two) and more research may be given to this type of tumour.  She also advised that she would email me with any information she finds in her efforts.

I left the Royal Marsden with a spring in my step and feeling positive about my future.  Nothing had changed since my going in but I had been able to ask questions, be given honest answers and then to formulate my own decisions based on good advice.  I knew when I left the hospital that I cannot say I'm cured or I've got the all clear but what I can say is that I'm in control of my future and my care management.  I have the support and, I believe, high regard of the medical teams that I've met - to me this is important as it has meant that my concerns are taken seriously and they know that I don't panic about my diagnosis and prognosis but rather want the evaluate and understand my health plan.

If nothing else, I would like to think that my journey and inquisitive approach to my diagnosis has, in some way, helped raise awareness, reporting, data and research but also provide a supportive hand to others.

Have to confess to being nervous about the next couple of days of medical appointments.  Although grateful that the appointments are now and not scheduled for some time in the future and I have to wait longer for answers.  BUT... Will they play nicely and tell me kind things?  Will I remember to ask all the questions I have?  Will the pain be there when I get into the appointment or will it be like when you get to see the dentist and the toothache is gone? 

Yesterday afternoon there was jointly a little knock and a huge hammering on my front door.  Upon opening the door I was greeted by my niece and nephew (of course), closely followed by my brother on the snowy pathway.  They had forged their way 'easily' in their 4x4 with the sole intention of abducting me for 24 hours.
 
After a few challenges on the Wii by my 7 year old nephew (how do small children know how to work these things and navigate games I'd not yet discovered?), we drove off in convoy down the farm track.  I'm grateful not to have been doing that drive on my own as I appeared to push the deep snow out of the way with my bumper and I'm quite sure the underneath of the car is now much cleaner for the scratching!  Once out of the farm, I slipped and slid until reaching the main roads and was grateful to note these were much clearer.  A lovely family time for 24 hours - cuddles from my niece and nephew, building lego, sledging, eating delicious meals and generally being looked after, not to mention injecting a little bit of Auntie Anna naughtiness!

I'll be honest with you; I've struggled this past couple of weeks.  Not particularly with the pain, I'm sort of getting used to that, but more with where my head has taken me.  This probably isn't helped by the relentless cold and snow which has meant that I've been housebound for the past week, with me, the internet, TV and my thoughts for company.  I can understand now why they say cancer survivors may get depressed or feel isolated whilst to others the battle appears to have been won and their fight is over. 

 

There's also reference made on cancer charity sites and in the leaflets that unlike many illnesses, breast cancer survivors are just that...survivors.  We don't get the chance to say we've got the 'all clear' but to simply count days/weeks/months/years since our last recurrence to which we can mark our survivorship time.  I've been asked by a number of people if I have the all clear and if I'm better and every time I hear that question, it breaks my heart just a little bit more.  It's hard to just put a smile on and pretend that you're feeling grrrreat!

 

If I wasn't feeling isolated enough this week I was also reminded that we're all human and bureaucracy is everywhere.  I registered with a support group that specialises in rare cancers and have been regularly searching for information relating to Phyllodes tumours on this site and also reading other survivors' stories and questions in a search for answers for myself.  In addition, where I've been able to, I've been replying to postings from others seeking answers. 

In these postings I have, where I feel it to be a branch of support added that there are a number of us ladies on Facebook and saying if they'd like to friend us they may find the support helpful.  As you know from my website witterings I've sought help and support from a number of different sites, forums and resources.  I guess being diagnosed with a rare cancer has meant that there are fewer people with it and therefore less information available to us so we (certainly I) will take any help I can get.  Sadly this week the administrator of the site deactivated my account on the basis that I was redirecting users to other online groups.  I'm sad because I hadn't realised that by offering a hand of friendship to others I was a breach of this website's rules.  I'm also sad because if sites like this continue to make the club exclusive we miss out on the opportunity of raising awareness to this rare cancer and thereby any research or publicity.  But it's their site and their rules.  Personally I know I would have struggled thus far without these additional forums and resources.

 

I've read that I'm now classified as 'disabled' as a cancer survivor and to me that makes me feel like I'm never going to get better or be over it... I know it's just a 'word' and it's more about attitude but it does make me wonder what that will mean for my future with regards to financial planning, life policies, mortgages, insurance or my career.  It's daunting to think that this could determine my future in more ways than just the surgery or treatments.  I wonder if I'd feel differently about this if I was married or in a permanent stable relationship whereby it's not all down to me alone.

 

As most of you know I don't have any children and have always maintained that it's by choice.  Those of you who know me very well will know that I was told at an early age (18) that I couldn't carry full term and therefore wouldn't be able to have children.  The reason I'm saying this now is that it's been very much in my mind recently.  I sway from being grateful that I don't have children or a partner who would be seeing me go through this journey or indeed that I may one day have to leave prematurely.  The spin side of the coin is that without them, I don't have the same drive to stay positive and fight.  Equally I'm every now and then acutely aware that I don't have access to that unconditional love, hugs and warmth that you get from children and partner or the comfort and safety as you fall asleep in the arms of a loved one.

 

Thanks for listening (well, reading) and apologies if this seems a little too much truth for one entry - thank heavens you can't read my mind!  I feel better for having put this down on 'virtual' paper.  I do have some truly tremendous friends and family but some things are just too damn difficult to say face-to-face without sounding like a victim.  I often never get to the reasons why my mind has reached a conclusion but on 'paper' I have a little more confidence to voice my thoughts and perhaps this written blog will help you understand my journey and I suspect other survivors. 

 

Right-O - face on, lippy on and smile Wolbag... atta-girl.

Well I chased up what was happening and was eventually informed that I ‘had been overlooked’.   I can’t tell you how many times my heart skips a beat or drops through my stomach when I’ve been told that or hear those all too familiar phrases ‘what is phyllodes?’ or ‘I’ve never dealt with one of these before’.   I go from being angry and anxious to being tearful and feeling utterly broken.  This really is a rollercoaster and those of you who know me well, know I hate rollercoasters!  I so truly just want to get off now.

I’m going back to work on Monday and had hoped that this would have all been over by the end of 2010 and that I would have had a few healthy weeks to have fun and catch up with friends before going back to work.  The company has moved offices this week to, so I go back to my old job in a new location and can’t help but feel that it’ll be like starting a new job but with the knowledge that I know what the job is!

This morning I received the call I had expected last week to set up the appointment with a senior breast oncologist at the Marsden in Chelsea on Tuesday.  I presume that the results are in from the re-slicing and re-dicing of my pathology and once again wait apprehensively for Tuesday’s appointment to arrive.  I also have a number of questions about my condition including whether the tumour was hormone receptor positive or negative, if clear margins were obtained and why the classification isn’t entered into the NHS database.  And of course what the odds are of this cancer recurring or metastasing to other parts of my body.

So that’ll be Tuesday afternoon taken care of and on Wednesday I have my first follow up appointment with my surgeon.  What a fantastic first week back at work and so much for moving on with my life.   I am, however, relieved to be seeing my surgeon (and my Macmillan nurse) as I will be able to ask him if the pains that I’ve been experiencing really are the tissue reshuffling or the scarring of the previous surgeries twinging and not, as my mind tells me, anything more onerous.  At least I know the drill at that hospital and am assured that if there are concerns they will do the tests and scans that are needed to check. 

Well time to knuckle down, prepare to go back to work and once more wait for my appointments and any further news.

Still waiting for results from the re-slicing and re-dicing of my the second excision pathology.  My radiation lady had been so certain when she said confidently to call her if I'd not heard by 4th January.  I'll be calling her tomorrow... I'm fed up... it was meant to be over by 2010...