London Marathon 2011

Posted on 17/04/2011 by AnnaGoAnna

Not sure I’ll ever be fit enough to run the London Marathon but that doesn’t stop me from heading up there to support ~~idiots~~ heros that do!

Today my new friend, Phil Wilson, is running to raise money for Breakthrough Breast Cancer. He’s been training hard and given up the rock and roll lifestyle to put his heart and soul into running the race.
Various ‘team Phil’ were at different spots along the route to cheer him on. I was at mile 25… not far from the end and we were cheering pretty loudly. When Phil made it this far he looked to be in pain but rallied by the support.

He then grabbed a flag from Sarah and ran on, leaving many of us (including me), in tears. Phil was running it for all diagnosed by cancer… a few of us had the honour of being named on the flag. I didn’t know about it beforehand so ‘thank you’ Phil. An honour to share it with so many other amazing people… some of whom I have the pleasure to call my friends.

Phil did amazingly well. He finished the race. He raised a lot of money for Breakthrough Breast Cancer. He also did a great deal of media talking about why he was racing and, of course, his blog and social media. Worth a read… and watch out for his next adventure once his Tiger Feet have recovered…

Olympic tickets go on sale

Posted on 15/03/2011 by AnnaGoAnna

For once I was up with the larks, coffee made and drunk, breakfast foraged for and disappeared. I anxiously waited by my computer for THE moment.

What moment you might say? Perhaps it’s passed you by?

Then the clock ticked over, it’s time!

The first time to be able to put in your request for 2012 London Olympic tickets. I am soooo ready for this. I clickety-click away and put in for quite a few events. In fact I’m sort of worrying that if I do get them all, just how I’m going to pay for them. But then again the likelihood of that is very little.

I remember doing this when I was in Australia. Dave and I put in for quite a few events each and we ended up with 2 pairs of tickets each. We did of course manage to obtain other tickets or go along with others who had a spare. I saw 8 different events in Sydney, truly amazing.

I’m not sporty. I like sport. I like watching it. I play a little. I don’t understand the off-side rule (despite it being explained a squillion times). I don’t know who all the players are or where anyone is in any particular league.

But I love being a part of something amazing. I love cheering on the underdog. I love seeing how a game/match/event changes in a heartbeat. Mostly though I love the ‘possibility’.

What an incredible event. I can’t wait. I wonder what tickets I’ll manage to get. My application is in…

Internet – friend or foe?

Posted on 07/03/2011 by AnnaGoAnna

20 years ago when diagnosed with cancer we would have relied upon the information and resources provided by our medical teams. Perhaps we may also have covertly visited the library to read up on any information that they could provide. Perhaps, in a hushed voice, we would have spoken to family members or colleagues about the c-word.

The internet has opened up the whole world to each of us who has online access. We can pop a word or phrase into a search engine and up comes the results from Australia, India, Europe or perhaps, from just up the road. Is all this information helpful? Does it make you question your medical treatment or prognosis more or does it help with decisions? Do you search for a better result with each click?

My personal experience has led me to love and hate the internet in equal proportions. Sometimes my best friend and at other times my arch enemy. On the one hand it provided instant access to information, online forums, support groups and a world of possibilities. On the other, it was confusing, opinionated and at times terribly misleading.

I trawled through pages and pages of returned Google searches, I yahoo’d, Bing’d, Asked Jeeves and a squillion other methods to find anything and everything I could. I would go from page to page eventually ending up at the end of a Google search… you’ll know yourself that you rarely flick past page 3 of a returned search result but I would go to the end in the hope that there would be a breadcrumb there.

I found information, I scanned the results, I wished I understood medical jargon better and my thesaurus became a new friend (my doctor friends, I’m sure, were fed up of me calling them and pronouncing names wrongly whilst asking what something meant!). I read the words and all the pages and often read paragraphs that weren’t even there. But what I realised after a while was that I was only retaining the worst statistics, creating a world that was more frightening than the page of information suggested, I guess it was like being presented with a page of 20 points, 19 great ones and 1 not so great. I’d only remember reading the 1.

So, was the internet useful? Yes, absolutely. But I had to learn (to teach myself) to read it all, to focus on the positive points. To reread the positive 19 points over and over until they were all that I could remember. To drink in the information that was good and to read, then acknowledge and then discard the point that wasn’t. I had to learn to look to the positive and re-write a paragraph so that it was right for me. I learnt to store information for a later date by reading it and putting it to the back of my mind until I was ready. Sometimes because I knew that a situation would arise that I would need to draw on that information and at other times because I needed to retrieve it only when I was with a friend or my doctor to discuss it and understand it further.

I think the biggest lesson that I will share with you, is learn to love the internet and the information it presents to you. Read everything you wish and to ignore things that you find tough. Don’t feel guilty about not reading every word and stop when you’ve had enough. Take a pen and paper and write down a positive thing from every article/page you read. List them like bullet points and refer to them later when the other 1 ’not so great’ point pops in to your head. If you’re unsure of content or stuck on what something means, print it out, highlight it and ask a professional now. If that’s not possible, use it as a reference point another day and look for more information that may make the first article easier to interpret.

Another important lesson… don’t believe everything you read! It may be that the writings in a forum, blog or article aren’t that of a professional but someone’s opinion. It may also be that the text has been taken out of context or that your intepretation of their written word would have been different if they’d been able to deliver it to you verbally. If you find something that you’re not sure about, seek out the ying to the yang; or print it out and ask a friend/medic for their interpretation; or simply, bookmark it to read again at another time.

One final word, there’s a lot of information on the internet and despite pages like www.internetlastpage.com there will also be more written and available to you. But also remember to heed the advice from http://www.internetlastpage.com and “turn off your computer, and go have fun!”

Girlie weekend in Venice

Posted on 31/01/2011 by AnnaGoAnna

Hehehe Millie and I headed off to Venice for 3 nights escape. How fab is it to be able to hang out in a beautiful city with your friend and just chill… no husband, family, appointments or cancer to get in the way of a blissful, cultural and rich weekend away.

Venice was stunning and down every alleyway a new adventure. We walked and walked and explored and found fantastic little treats throughout.

Oh and our hotel was so gorgeous, comfortable and out of the way that we managed to sleep undisturbed until late – quite a treat for Millie.

A New Year…

Posted on 31/12/2010 by AnnaGoAnna

As we make our way into a new year and a new decade, I figured there should first be some reflection on the year just passed… but that would be the sensible thing to do…

Sensible Bit

2010 was a year of enormous change for me. I was recovering from the operations at the end of 2009, adjusting to the new AD (after diagnosis) me and reevaluating my life and its purpose.

I learn’t such a lot of about myself, my resolve, my strengths and also my weaknesses. I finally unwrapped a number of mental boxes and worked through them – some good, some not so good but all needed to be reopened.

I would give back cancer in the blink of a fly’s eyelid (which is pretty fast!) however because of my diagnosis I have viewed things differently, I’ve pursued different dreams and goals; I’ve met some incredible and inspirational people; I’ve cried, a lot; I’ve treasured laughing more often; I’ve seen people thrive and also seen people die from this disease; I’ve realised and acknowledged the fragility of life; I’ve said ‘I love you’ more often (and meant it); I’ve appreciated the little things; I’ve learn’t not the sweat the small stuff; and a whole heap more.

What I haven’t done is learn’t to wake up every day and NOT think about cancer. What I haven’t done is remember that just because I was diagnosed it doesn’t necessarily mean it’s going to come back.
What I haven’t done is learn to put me first.
What I haven’t done is lose the weight that I gained when I was poorly.
What I haven’t done is get myself fit and healthy.

So, the trouble with a blog is that I stated in ‘ink’ what I was going to do in 2010:

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

So did I do them? Well, probably like most of our New Year resolutions, I did MOST of them (and Phyllodes is in the NHS system!).. there are still a few that I’m going to put back on the list for 2011 though and even a few of them that I’m going to repeat as I loved doing them… so here goes:

I’d always insist on doing more fun stuff, travel, catching up with friends and laughing until I pee myself! Berkeley Square is always on the list… if I could possibly do it, I’d build myself a little glass shelter and live in Berkeley Square listening to the sounds of life around me and watching life go on, whilst reflecting on lives past. My brother is building me a shed and an art shed for the garden – art installation should surely be finished by the end of 2011. I’m off for a drink at the newly refurbished Savoy – I wonder if it still retains it’s old world charm, at all? I must lose weight and get fitter. And the biggest and most challenging of all, I want to stand at the podium and welcome 500 survivors and co-survivors to the first annual event for anyone affected by breast cancer in the UK.

Every day the enormity of the task in hand looms and I wish I wasn’t alone in doing this. I would love help so if you’re able to lend me your expertise for free and because you believe in the event and the value of the event then please do get in touch. I would love anyone who has any experience with hosting events, marketing or PR. We would also appreciate any donations – you can donate onwww.LivingBeyondDiagnosis.com. We would also value some introductions to any corporate or personal sponsors for the event too. The 3-day event for 500 attendees will cost an estimate of £250,000 which is no small feat in the current financial market however this equates to £500 per attendee and I believe will help them face their future, so it’s a small cost in the scheme of things.

Silly Bit – you knew there would be one!

Just before Christmas my boiler decided that luke warm water was the way to go… talk about attention seeking – Ooh I spoke quite firmly to it as facing luke warm bath or intermittent shower wasn’t on the agenda for long! Anway, I eventually called in British Gas – and yes I had cancelled the British Gas heating cover only a few weeks previously in an effort to save money! A delightful young salesman from British Gas eventually turned up (4 days late) to tell me that I needed a new boiler at a mere cost of £2,700… a tad rich when I have no income and hadn’t planned on this outlay! However during this inspection for the quote (I use that term loosely as am sure they just picked a figure out of the air)… I suddenly realised that he’d need to look at each radiator etc so rushed into my bedroom to remove an offending article from my dressing table (now get your minds out of the gutter!!)… I am referring to my silicone half boob that I now wear in place of the tissue removed during the two operations! Those of you who have seen me dressed wouldn’t notice but just call me 1.5 boob Wallace! Or at least I think I moved them (there’s a spare!) but after his visit, I was due to leave the house and therefore out of my surgical bra (much less pain wearing this!) and went in search of a halfboob.. I can’t find either of them anywhere… and believe me I’ve looked. At first, it was distressing and then the more I thought of it, the more it made me giggle.. the thought of Mr British Gas with a fetish for silicon halfboobs.

This led me, as it has for much of my ‘journey’ to Facebook and posting an update on my ‘wall’ which said:

OK everybody.. Try not to laugh… My silicon halfboobs have gone missing! I tidied them away from top of dressing tble when British Gas popped round to give me an outrageous quote for replacing my boiler (still no hot water chez moi) and they needed to measure each room. I wasn’t wearing them as was kitted out in my post-surgery bra… I now can’t find them… anywhere…

Shall I call British Gas & see if the engineer has a halfboob fetish?

I told you not to laugh!!! (hehehehe)

You will be pleased to know that my Facebook friends didn’t let me down… there was quickly a trail of comments including one from my sister-in-law’s account “this is Joe to much inforpanchon” OMG I’d forgotten that my nephew used her Facebook account to play Farmville! When this update came in I was midway through leaving a voicemail message which, as you can imagine, ended up simply being me giggling like a schoolgirl and saying I’d have to call back later. The phone then rang and it was my nephew who said “sorry but I also laughed”!!

Some of the other comments:

I hope British Gas haven’t used them to insulate the boiler
Hehehehehe… sorry!! It will probably turn up in the daftest place
We actually have these things for dinner – here they are called “Kartoffelknödel”. Maybe a hungry German came along..
lol Know the feeling!!Ha ha I only needed one so if i lost it…like i did on the dance floor!! lol I’ve always one back at home as a replacement!!!
Nope, i’ve looked and they’re not here, babe
[Me] Sorry can’t stop laughing now… my nephew was logged in as my niece (Tori) and spotted this update and posted the comment! Just as i was leaving a VM for Sam (sorry Sam your VM is just be giggling like a loony)…
Hmmm AND my meeting’s been cancelled so might just put post-surgery bra on and be done with it!
I would do that semi regularly. I ordered 2 new boobs and a spare! Got three of them in the mail one day (big expense, I know….) and had a laugh with my husband about trying on all of them at the same time…..
that is so funny!!! Xx
[Me] Funny bit is.. I still can’t find them!! I’m really starting to think that either a) Mr British Gas has taken them or b) they’ve left home and eventually I’ll be receiving postcards from my halfboobs on their holibobs!
PS Sorry JoeJoe (nephew) if this is too much information
PPS Sorry Sister-In-Law that you had to explain to JoeJoe what a silicon halfboob was (I’m in big trouble!!)PPS Am still laughing and v pleased it’s caused some level of amusement!
i am having such a bad time thank you so much for making me smile on a day when i can’t stop crying x
….or should that be holiboobs?
Ok, am here and back for a minute before mother in law dinner:- have to say that Jordan is selling her boobs on ebay….just a thought and don’t shoot the messenger but ..

And a few days later, I provided this update:

British Gas man must have ‘borrowed’ them. Still ‘no’ sign of them anywhere! New halfboobs ordered!

Or will they appear wrapped up under the tree?

And a few other comments along the way, checking in to see if my halfboobs had been found (and even my nephew calling to ask… oh and then asking his mother what a halfboob actually was!)… You see the lesson I learn’t from posting this, is that although some may find it a little tragic that I wear a silicon halfboob, all can, (perhaps after a sharp intake of breath), find the funny side. I have and I’m so pleased that this gave some a little giggle. You see if I’ve learn’t one big lesson from being diagnosed with cancer, it’s that laughter is terrifically important and sometimes you have to dig deep but you can always find an edge upon which to laugh at any situation – it’s helped me enormously. I’m sorry if this sounds irreverent or offensive to anyone… perhaps it’s just my coping mechanism but… try it.. smile and don’t stress the small stuff.

FYI – New silicon half boobs arrived in the mail this morning!! Whoohoo 2011, all present and correct!

Welcome 2011

I shall end today’s missive with a message to you all.. embrace the New Year and the New Decade with a smile and a care for others. Enjoy every moment and if it’s not a ‘good’ moment, change it – you can!… Happy New Year xxx

Sharon Fox Masked Charity Ball

Posted on 05/12/2010 by AnnaGoAnna

Through my journey I’ve met some amazing people. Many inspirational positive individuals who have taken their experiences and turned them into positive actions. One such person is Sharon Fox. Sharon and I met through Breakthrough Breast Cancer – we are both patient advocates. Sharon lives in Tamworth and was diagnosed with breast cancer at a young age, with small children and a busy life. She found that there wasn’t support for her in the local area and that in order to get the support she and her family needed, she would have to travel a fair distance – not possible when you’re very ill and have a family relying on you!

So, about the time when she was able to stand up again, she set out changing this. She put her story online via a BBC documentary. They filmed her highs and lows during and after surgeries and treatments. This raised the profile needed for her to be better known locally. She then set about finding an empty premises and then, the best bit, she put out a help request to the local community to help and support her in setting up a cancer centre in Tamworth! People came from everywhere to offer building works, heating engineers, shop fitters, carpenters, carpets, furniture, fixtures, fittings, gifts, kettles, items to sell and, volunteers. Within an incredibly short amount of time she was able to open the centre… not before she and her children sold their own items to raise extra cash to get it started. Selfless.

I was touched to get a mention.

So tonight I was more than happy to contribute something to her venture. I invited some friends to come with me, Liz, Kath, Zoe and I, dressed up, found masks and attended the Bells at the Belfry ‘Masked Ball’ this evening. What a fabulous evening. The evening started with a champagne reception then through to a stunningly decorated ballroom where the tables were sparkling, the food was excellent, the entertainment during dinner fabulous, a charity auction in which the bidding was ferocious and finally a live band and disco. Brilliant.

We left with a assortment of successfully auctioned goodies and a calendar. Here’s a few pics from the calendar of wonderful ladies who were affected by breast cancer posing for this calendar.

Loved the evening and know that this will have raised lots of cash to ensure the Sharon Fox Cancer Centre will continue for longer.

A wonderful write up on The Redfords website.

A realisation

Posted on 10/10/2010 by AnnaGoAnna

This past weekend I’ve spent in Biarritz with some beautiful friends from Australia. I was reminded once again, how important good friends are and how with great friends even though you may not have seen each other for an age, there’s no full-stop between visits.

But I realised something else. For many years, I’ve been ‘doing the right thing’. I’ve bought property and spent the required hours, days and weeks renovating, decorating and ensuring my investment is a good and well planned one. I’ve moved house; to move away from a bad relationship (in itself which had caused enormous stress); to be nearer ailing parents; and also change jobs to one with the promise of greater things.

What I didn’t do during the whole time was remember what really makes me tick… a simple life exploring and travelling. Always the next ticket is booked, an adventure planned or a new location sought. It’s never meant a huge expense but always bought me so much joy when I see, taste, hear or discover something new. I love nothing more simple than jumping on a plane to a new location and that moment when you touch down, the doors open and you can smell a new land. Or as you wander through the airport terminal, the new languages, dialect or accent.

A freedom that comes with exploration.

An admiration for architecture and culture.

A taste for a new sensation.

I forgot to do this for the past few years and missed out on something that I realise now was a ‘stress relief’ that I loved.

So this last month, I’ve been to Spain (Mallorca) and I’ve been to France (Biarritz) and I’ve plodded around London and the English countryside and seen new things, heard new noises, tasted new things and felt free.

But where will my passport take me next… anyone need a guest or a partner in crime?

September/October blur

Posted on 23/09/2010 by AnnaGoAnna

I am pleased to report that I’ve been busy…. busy doing things not busy rushing back and forth with hospital appointments.

I’ve taken a holiday in the sun. I’ve relaxed. I’ve decorated. I’ve busied myself with planning and plotting of the conference. I’ve had meetings and discussions. I’ve been frustrated by beaurocracy and commercialism. I’ve taken part in projects for cancer charities and others for the NHS. I’ve signed up for more roles within both charity and NHS capacities. I’ve tried to get my voice heard and my face seen and to be an advocate for cancer survivors. I’ve been asked my opinion on my journey and where things could be improved and I’ve watched as eyebrows were raised when I spoke well of my GP and surgeon. I’ve tried to find the positive and offer advice or suggestions for improvement. I’ve taken part in films for GP training and I’ve written to MPs and signed petitions. I’ve supported and held hands with others going through this journey. This website still attracts new visitors looking for answers for Phyllodes and I’m pleased that I’m able to offer them some comfort and support. Sometimes it’s been hard – particularly when I’m tired or not feeling great.

I’m doing well but every now and then my boob still hurts – today’s been a bad day. I know there’s nothing wrong and I don’t feel like I’ve to worry but it still hurts. However that doesn’t and shouldn’t ever stop me from helping others, in a small way or through the event I’m putting together. I still feel so passionately that everything happens for a reason and I can make a difference.

I have a voice and (some may disagree) am intelligent and articulate… if my voice, writing, enthusiasm or ability will make a difference, then I’ve been of use.

You’re not alone

Posted on 15/11/2009 by AnnaGoAnna

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

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

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

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

Search for a solution begins

Posted on 18/10/2009 by AnnaGoAnna

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

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

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

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

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