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
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.
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!