Haha I must be getting old.. don’t these years just dash by? In my head it’s still 1980s but my body tells me otherwise.  Those involuntary sighs as I get up from a chair or when I start a story with ‘I remember when…’ or even when I refer to something and my nieces or nephews ask me explain what I’m talking about, such as vinyl records or cassettes!

Anyway, 2014 was OK.  I’ve continued to be involved in projects, research boards and attend cancer conferences as a patient advocate.  I went to Uni for an intense week to study cell biology and cancer as a patient advocate.  I’ve travelled, explored and lived.  I’ve lost friends to cancer and made new friends because of cancer.  I’ve attempted ‘crafting’ projects and discovered that I’ve got not only passion but I’m OK at it too.  I’ve been on TV… in Germany and the UK.  I challenged myself vocally and also recorded again at Abbey Road.  I’ve played and watched a LOT of tennis and loved it.  I’ve been in and out of Drs waiting rooms with unexplained symptoms.  I’ve ‘had’ culture in the form of a diverse selection of theatre and concerts.  I’ve been diagnosed with an autoimmune disease.  I’ve eaten out.  I’ve cooked and hosted at home.  I’ve discovered juicing and retreated abroad on a juicing holiday.

I’ve also had two more sets of scans, xrays and mammograms and I remain Phyllodes free.  Whooohooo.

I wonder what 2015 will bring… watch this space!


I hope those of you who’ve read my blog for many years have been enjoying the diversity of my activities.  I also hope you’ve noticed that although cancer is still in my life and I’m still on a 6-monthly regimen of checks and scans, it certainly isn’t all consuming of my personal life.  I’ve been involved with many projects, committees, boards and charities as a patient expert or advocate sharing my own experience and that of others.  At times many more hours than in a usual employed working week (and unpaid)!

I’m also hoping that you’re loving hearing about my adventures… Travel, theatre, restaurants, creative projects and general living.

Long may the diversity continue and I hope I inspire others.

2012 – October

Eeek it’s over a year since I updated this Why? page.


In 2009 this website/blog was started so I could keep my family and friends up to date with my health following diagnosis with a rare cancer, malignant Phyllodes.

In 2010 this website/blog continued with regard to my health.  Also a voice for what I was doing within the cancer/health community with regard to Phyllodes and my particular passion for cancer survivorship.  This site also appears quite high on search results for Phyllodes for those seeking support and information – I’m pleased to be a conduit to support, reference pages and our Facebook “Phyllodes Support Group” together with sharing my own experiences with others.

In 2011 this website/blog continued with all the previous reasons.  However when I didn’t update it for a while and received a message through the ‘contact’ page implying that my health must have taken a turn for the worst, hence no postings, I decided it should reflect what I was doing now… proving there is ‘life after cancer’!

In 2012 this website/blog continued with more of the same… with a major blip when Microsoft stopped providing websites via small business live.  So with little notice I had to rebuild the site and move it to WordPress.  Sadly some of the content didn’t make it over and I’ve been busily trying to rewrite some entries and fill in some gaps.  Forgive me if you’ve subscribed and receive some ‘backdated’ entries!

As at today.  I’d like to think that the content is still valid for all the reasons as before.

I know that friends and family sporadically check in to see how I am.  I know that the website still appears high in the results for ‘Phyllodes’.  I’m contacted frequently by people newly diagnosed or caring for someone who is.  In addition, I’m enjoying telling people about where I’ve been, what I’ve enjoyed and what I’ve done.  Together with updates from the many cancer and health related boards, committees, conferences and meetings I attend.

Do message me or comment on any posts… I’d love to know more about the many many people who visit this site from around the world, and why?


PS  Hair is much more naturally highlighted these days… (errr that’ll be many more than 50 shades of grey appearing!)

2011 – September

Well Helloooo Lovely People,

One year on from my last entry on this page – I figured you needed a summary and a hellooooo here.

My checks in January and July came back clear.  Whooohooo.  My consultant however has suggested that we continue with the scan routine (6monthly ultrasound & annual mammogram).  I do feel assured by this and also ‘cared for’ by the team.

I’m also continuing with this site and am going to make a concerted effort to add more links to resources and information I find on the reference pages.  I tend to post them into the ‘Phyllodes Support Group’ or ‘Living Beyond Diagnosis’ on Facebook or tweet them via the ‘BeyondDiagnosis’ account together with other health and cancer related information I find… but I need to add more on this site too **slapping wrist**.

Another, and less selfish reason, still applies for me to continue with this… there are others, as I was, newly diagnosed or still searching for information, support and help, who have found this site, me and then the support group.

How fabulous is it to hear those words ‘You are not alone.”


PS  Hair is back to natural colour – blonde!!  (although there’s a little more ‘natural highlighting’ ie grey than I’d like!)

2010 – September

Hello Again,

I felt that I needed to somehow update this home page but not to delete the original content as the reasons why still stand true.

Of course you can read my journey and get the detail but I’m pleased to say that, I’m two operations down and they believe they’ve got all the bad boy tumour stuff.  My next check is in January 2011 and I’m feeling pretty good about it.

One of my ‘wishes’ was that this site would also be a place of refuge for newly diagnosed with cystosarcoma phyllodes and to provide them with a resource for information and help.  I’m continually reminded by those of you who contact me that there is little information out there and that this has been a wonderful resource.  I am however still saddened that it’s needed at all.

For anyone reading this for the first time, you are truly NOT alone in your journey with Phyllodes.


PS  Hair is currently brunette – I’m thinking it’s like a ‘scientific’ experiment.. I’m a natural blonde, have been very red and now a brunette.. I mean, who does really have more fun!!!  I’ll let you know.


I intended to use this website for another purpose however this year (2009) life has taught me to look and learn from each experience.  Sometimes this has been easy and other times it has been one of the hardest lesson to implement I’ve ever had to experience… when I want to go down to the bottom of the garden and eat worms or get on a plane and run away!There are some experiences that I wanted to share with you, particularly being diagnosed with a rare cancer – malignant phyllodes tumour.  I’m hoping to keep up a blog about me, my diagnosis, information about this type of cancer and how I beat it (or will!).  When I was diagnosed it was quickly obvious that there is little or nearer no information about a malignant phyllodes tumour, treatments available, studies performed, facts and figures and people to speak to or with to understand their journey and what lies ahead.What I have also discovered is the internet is a wonderful tool and a life saver at times like this.  I’ve met some extraordinary people who have ‘virtually’ helped me through my journey so far and I hope to repay the compliment in time too.  I’ve also learned that I have the most fantastic friends.  Love you all.I’m also acutely aware of being tested in my knowledge of NLP.  Some of you will know that I qualified as a Neuro Linguistic Practitioner earlier this year and have been using a lot of the techniques I learnt on myself in an effort to remain positive and use mind over body.  I’m so grateful that I studied NLP this year and it has been a huge resource for me to call upon to help get through the worst times and look on the positive side.I hope that at least this little bit of information may be useful to someone else in my predicament and a link to others who can help, listen and advise.  Please do contact me with any queries or questions you have and if I can I’ll help, or point you to someone else who may be able to help.

One thing I have learned recently is to laugh through the anguish and to smile at life’s mysteries.  So have a little laugh with me – do something ridiculous and smile!


PS Apologies to any of my friends for whom this comes out of the blue.  Although I have been very upfront about what was happening with those that I have had to stand up or those that I’m shortly to see (saves them wondering why I’m going home early or perhaps a little lopsided) however I didn’t tell everyone because I thought it’d all be over and done with and my benign lump would be long gone.  But I didn’t quite expect what happened next… soz.

PPS Perhaps some of you now understand my need for some colour in my life… ie my hair!



13 thoughts on “Why?

  1. Please can you let me know the name if your consultant at the Royal Marsden as my surgeon is not knowledgable about phyllodes

    • Hi Rhonda,

      I’ve replied more fully to your other comment but the relevant bit for this is:
      From your comment, Rhonda, I’m presuming you haven’t been referred to a specialist for soft tissue sarcomas? Firstly, I’d request this is done. I’m not sure where you are living but there is a list of the soft tissue sarcoma specialist centres in the UK at http://sarcoma.org.uk/specialistcentres.

      I am treated at the Royal Marsden in London (as are quite a few others with Phyllodes). The whole sarcoma team know and understand Phyllodes and I also know several people who are treated by different consultants there who have had excellent service. You can (and should) request your care is transferred to a sarcoma specialist centre for any future treatments/surgeries but also your follow up diagnostic care.

      • Hello Anna.

        This is Bea Valle from the Facebook group.🙂 I would be interested to know whether my GP can transfer me to Royal Marsden from Guys Hospital for follow up care. My revision is due in December after surgeries in March and April.

        Many thanks.


      • Hi Bea,
        Absolutely you can request to be transferred. This can be requested by your current team at Guys or by your GP. Do ask them to refer you to the sarcoma team at RMH.

      • Hi anna I did mention to my gp about referral to a sarcoma specialist but he said breast surgeons are breast surgeons. I really feel my current breast surgeon is inexperienced but I dont want to hold up my surgery any further iv already had this phyllodes in me for four months and I just really need to get it out.

      • He’s right in one sense… the surgery for Phyllodes in breast tissue is usually carried out by breast surgeons. However ask him to assure you that he’s aware that if it is Phyllodes it should have sufficient margins removed for Phyllodes. If he is unsure what these margins should be ask him to consult a soft tissue sarcoma specialist.

        I would also ask him to confirm that your file has been reviewed by a soft tissue sarcoma specialist at the MDT meeting.

        In the event that he doesn’t achieve clear margins, then you may have to undergo further surgery and clearly you’d like to avoid this, if necessary.

      • Unfortunately I know all too well about the failure to get clear margins. I needed further surgery after my first phyllodes to gain further margins. I did mention this but they just told me I may need further surgery after my phyllodes is removed and as im sure you know autoimmune diseases dont like anesthetic. I really appreciate your help. I feel very isolated because of the rarity of my disease.

      • Rhonda, where are you in the UK? If you’ve previously had a phyllodes and therefore a high chance of it being a PT again, I can’t believe they won’t refer you to a specialist. If it was me, I’d ask my GP to refer AND write/call a specialist direct about how to self-refer. You’re right auto-immune doesn’t like anaesthetic and they’re not supporting you as a patient by dealing with it in this way.

      • Thank you for your kindness and understanding!!! You have no idea how much that means. I have had my first phyllodes misdiagnosed and needed more surgery and this phyllodes is not being treated properly either. I also have a large cluster of cysts on right breast that refill immediately and they dont do anything about those either and yet I noticed one of the ladies on your post had this problem and there was a phyllodes amongst the cyst. This new fast growing solid mass is definately another phyllodes. I go to see my neuro tomorrow about my autoimmune disease and I will see if he can help with a referral to a sarcoma specialist. Your list of specialists was very helpful and there us a specialist team in northern ireland.

      • PS If you’re on Facebook ask to join the ‘closed’ group Phyllodes Support Group (https://www.facebook.com/groups/PhyllodesSupportGroup/). Your posts will only be seen by members of the group. At the top of the group page there is a heap of information we’ve put together and a number of polls… I know there are others from Northern Ireland! It may be that they’re able to give you the names of their consultant/team so you can speak directly to them.

  2. Can you please let me know who your consultant is at the royal marsden? My surgeons have zero knowledge about phyllodes

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