GP

Posted on 07/09/2011 by AnnaGoAnna

My lovely GP called me in to see him today. I didn’t know why but presumed he may have received the results of my latest scans from the hospital and was just checking on me.

I’ve said before that my GP is the best in the world and I’m terrifically fortunate to have him as my GP. Sure enough he just wanted to take my blood pressure, blood test and generally check on me. We had our usual little chat. He was also able to take some blood for me to send off for a clinical trial that is being carried out into DCIS (you may remember they found one of those in me too!).

I was my usual bubbly self. As the appointment was coming to the end, he asked me ‘how I really was’. To which I gave my usual chirpy answer of OK and the mask was firmly on. As I left his room, he said he worries about me putting a brave front on and then said “Anna, YOU know what I mean. And you know where I am.” Barely made it out of the surgery before the tears fell. Thank God for my favourite place to put myself back together again… I headed to Berkeley Square and probably looked like a loony-tune sitting, staring and thinking!

2 years and 2 days on

Posted on 22/08/2011 by AnnaGoAnna

It didn’t go unnoticed, by me, that on Saturday 20th August 2009 was the day that I found the lump that has caused me so much anxiety, sense of loss and belonging together with a feeling of being so alone. I remember so clearly the moment as I was getting ‘ready’ for Mum’s funeral, changing in and out of outfits and adjusting myself when I felt that lump (which then became lumpS). I remember that moment of sheer panic and fear, that moment of anger that Mum wasn’t alive for me to go to for help… instead in a few hours time we would be at the crematorium turning her earthly body to ash. I don’t know if I’ll ever forget that moment or, like other moments in this journey, when the world seems to suddenly turn black. That moment when I can’t see any light to run toward or any chink that makes any sense or demonstrates that there is life and light beyond.

So two years on I did something very different. I went to a music festival with a friend. Shellie knows me well but didn’t realise the significance and I didn’t tell her either. I guess I needed to prove that I could do something new, exciting, positive and fun. Prove it to myself. With people who wouldn’t be worrying about me and what was going on in my head… and I did it. I really did it. OK so I drank too much on Friday night. I danced like a looney-tune and I probably embarrassed myself… but I didn’t let the darkness in. I remembered how to forget. I sang in a loud (probably out of tune) voice along to the sounds of the 80s on the Friday night stage for camping festival-goers. And then I collapsed in my tent and slept soundly until the morning.

OK OK, much like my time in the 80s I woke up with a raging hangover, feeling queasy and unwell. Perhaps also a little maudeline and quiet but grateful for the company of Shellie and our new tent neighbours with whom we’d launched our company upon on Friday night and had a great night with. Everyone else was chipper and late morning Shellie and I headed out for a walk along the river. The music festival (Rewind Festival) is held in Henley, my local town when I grew up. A place that I used to go with Mum and where many memories were held – good and bad. Walking along the river and through the town was good, cathartic in a way but one that I could only flash through in my mind whilst we wandered. I’d still not told Shellie or the others the significance.

I didn’t drink on Saturday and danced and sung along (perhaps slightly more in tune) to the hits of the 80s. Memories flooding back but all safely in my head.

This was my first foray into Festival going. I loved it… mostly. No I really loved it… the only part I wasn’t keen on was the sanitation issue with portaloos and very few showers (and a 2.5 hr queue for a cold shower!). Beyond those issues the rest was blinking brilliant. Danced, sang, laughed, chatted, giggled and generally had a ball. With Shellie but also with old and new friends… I even hope to go back next year.

I guess what I was trying hard to do, and I think achieved.. ‘best foot forward’… ‘onward and upward’ etc etc

I’m getting there… but there is a niggle in my head. There was at the festival, as there often is, a friend trying to match make me, concerned that I’m not in a relationship and convinced that I should be. Looking around for my ‘perfect partner’ and then quizzing me on my intention. I don’t think I notice men in a ‘relationship’ way any more. I notice them as being someone who I’d like to spend more time with. Or perhaps someone who I have a great deal in common with. Someone I enjoy being in the company of. But I’ve switched off anything else. Last night as I tried to get to sleep in the cold tent, I spent many hours thinking it through, having been quizzed heavily during the evening. I don’t know if it’s because I don’t think I’m good enough; I don’t want to inflict myself upon someone because what happens if the cancer does come back; I don’t know if it’s because I can’t put myself in the position of being knocked back and rejected; I don’t know why.. but I think right now, I’d much rather enjoy someone’s company, have a laugh, enjoy life, do things together without any expectation but mostly have fun. I don’t know… but I do know that I don’t know!

Anniversary

Posted on 07/08/2011 by AnnaGoAnna

I don’t often talk about Mum anymore… or at least not out loud. I do however go to dial her phone number and remember that she’s no longer here…. or I find myself talking to her or asking her opinion and then worrying that I’m not doing things as she’d want them to be done, or more often get frustrated and pissed off that she’s not here anymore. I also get upset that she’s not here to celebrate my achievements.

I was recently nominated by two separate people for the Divine Woman Award 2011. The two people who nominated me don’t even know each other but know me – one from the US and one from the UK. Astonishingly they also nominated me for slightly different reasons… one for my work within the cancer arena focusing on survivorship, patient involvement and support. The other for my work within the cancer arena but more particularly for my phyllodes work – finding out more, probing and asking questions, sourcing new information and more importantly my helping others newly diagnosed and through our Facebook group ‘Phyllodes Support Group’. Divine Chocolate realised that I had been nominated twice and I was shortlisted and invited, with a plus1, to the Finalists Reception with 5 other entrants. I didn’t win, but the lady who did was very deserving and amazing… as were the other finalists too. I went to the Finalist Reception alone because the only person I really wanted to accompany me was my Mum and she’s no longer here. But I hope she looked down and was proud of me and why I had been nominated and why I was selected from all the entrants to be in the final 6.

Mum fought for more information on Multiple Sclerosis, more research, more progress, more support and more awareness… she used to drive us all nuts in her quest to help and find out more. I knew why but I used to say to her to concentrate on herself rather than ‘the cause’ and get frustrated that right up until she was no longer able to use her fingers to write and use the computer, she would be writing to medics, politicians and health authorities with information, research or questions. I now so understand why she did it and why it meant so much to her to know that she had tried to do something so that others behind her may not have to struggle with MS the way that she had. She was determined to help find an answer as to why this dreadful disease existed and to find a way to relieve the symptoms for others. I know that she will have made a difference with everything she did… I just hope that I can do so with Phyllodes too.

So Mum, 2 years ago today I watched you close your eyes and soon take your last breath. I watched you peacefully slip away leaving behind your damaged body on this earth. You’d had enough of the fight. I know it was your choice to leave. But I miss you so much. Love you Mum.

Colonoscopy

Posted on 11/06/2011 by AnnaGoAnna

Following on from the disastrous attempt last month, I tried again.

I was sent the bowel prep and followed the instructions carefully (eek I really didn’t want to be too far from home!). By the morning I was very hungry with my empty tummy so pleased for an early start. I took a taxi to the hospital (a different hospital to the last) and had made arrangements for a friend to collect me after the procedure. So I’d done my bit….

However I was super surprised to find the waiting room at the hospital full of patients. It was a Saturday morning!

I soon realised that I was way down the queue to be seen and sat patiently slowly supping water whilst listening to my tummy rumble in the hope that my throat hadn’t been cut! One by one, the other patients were called until only I remained in the waiting room. I had spoken to a nurse who knew I was there and had said I’d be seen soon. So I was more than a little surprised when a registrar approached me and asked who I was waiting for! I explained that I’d now been there 3 hours and was waiting for my colonoscopy procedure having taken the bowel prep and was blinking hungry and bored! His response was a little shocked and rushed off. Returning minutes later to explain what had happened – I quickly said I wasn’t leaving until it had been done (and yes, I was close to tears). He told me that this clinic was always deliberately over booked by between 10-20% of patents. I asked why and was told that they expected patients not to turn up to it and more than often over 10% of them didn’t! However today was different. Most patients had turned up.

Why, when you’re referred for a procedure because of health concerns, would you not attend a screening which may well save your life or at the least diagnose why the concerns were there?

Anyway, not my problem. But it was. The consultant had apparently been on duty for the maximum amount of time and had reach the maximum amount of patients that he’s allowed to carry out the procedure on in one day.

Again, not my problem. I wasn’t leaving and doing this AGAIN.

Fortunately for me, they managed to find a consultant loitering in the corridors that was able to do the procedure. I’d almost forgotten how much I’d been dreading it by the time I was finally called. However what they’d also forgotten about was that as I’d not eaten and only supped small amounts of water, my veins had gone into hiding. After virtually passing out whilst they poked around looking for a vein to pass the anaesthetic in, I was eventually asleep and taken in for the procedure. Only 5 hours after arriving for my appointment!

They don’t administer much anaesthetic as you should be in and out quickly and they wanted me to be on my way so they could go home after the busy clinic. So, yes you guessed it, I woke up during the procedure and spent the remaining time looking at the inside of my bowel on the screen and chatting with the consultant. Gosh I’ve got quite a gorgeous (and clean) bowel!

My friend came to collect me shortly after I’d finished my cup of tea and little packet of bourbon biscuits – every NHS appointment should end this way!

Now to wait for the results to see if this helps identify anything with regard to the symptoms I’ve been experiencing.

Honestly, the colonoscopy was a little uncomfortable but not painful at all. So DON’T you be one of the 10-20% of patients that don’t turn up for your appointment!

Colonoscopy NOT!

Posted on 04/05/2011 by AnnaGoAnna

For many months I’ve been experiencing a lot of pain in my abdomen, swelling that comes and goes but is excruciatingly painful, headaches and dreadful nausea. There’s also been blood in my wee and also blood in my poo. Sorry if it’s too much information, just thought it was about time I was honest with you (as always).

I’ve been to the doctors several times and have been told it’s nothing to worry about. Then finally I was referred ‘urgently’ for a colonoscopy… several months ago! Fed up with waiting for this urgent appointment, in pain and worried, I’ve been chasing it up. Honestly apart from the pain and symptoms which have been pretty grim, it’s also painful, makes me tired and tearful.

Today didn’t help much. I had received a letter saying the appointment was today. I drove myself to the hospital to discover that I didn’t have an appointment. That they hadn’t sent me the prep to clear my bowel and that I also needed someone else to take me home as I’d be having anaesthetic. Oh and that I wouldn’t receive the procedure at this hospital anyway. Can’t tell you how fed up I am today.

I just want to find out what the blinking bananas is going on with my body.. it’s getting worse!

Isolation

Posted on 05/03/2011 by AnnaGoAnna

Through my own experiences and sharing with others, I realised that ‘surviving’ after a cancer diagnosis is far more than regular checks and/or medication. There is a huge emotional and psychological impact, there’s a new need to cope with hearing those words ‘you have cancer’, a re-evaluation, a recognition that procrastination no longer has a place in our lives and an eagerness to live, to thrive and to survive. I say that not to be glib or assume that it is easy either. For many the ‘reality’ hits us like a ten-tonne truck often at the strangest of times and may even be quite some time after diagnosis or triggered by something random.

For me, I realised the impact for the first time had been when leaving the hospital after the ‘follow-up’ appointment after my second surgery. I heard the swoosh of the first set of glass doors close behind me as I exited the hospital with my friend and then the swoosh of the second set of glass doors opening ahead. We both stopped mid-door and my friend turned to me and said ‘Do you feel like you’ve been dumped?’. She had managed to verbalise exactly how I felt. I felt as if a partner had just walked out of my life and with whom I’d relied for an intense but short period of my life (surgeries and treatment). I felt alone. I nodded and we walked through the second set of glass doors to the car and drove home in silence.

I should have felt elated, shouldn’t I? I mean they were ‘dumping me’ because I was done for now. OK so I had regular checks in the diary for follow up scans and there was still the discussion as to whether radiation would be required… but essentially, they were saying I was doing OK. I should have felt good. I should have been smiling and laughing and celebrating. Instead it was an overwhelming fear and grief that consumed me.

When eventually I went to my own house, I remember feeling even more isolated (and yes I really did live on a remote farm cottage overlooking fields!). I also remember spending hours on the internet, mostly in tears, desperately searching for answers. Or staying in bed as long as I possibly could trying to avoid the day… but never straying too far from a box of tissues. I felt as if I was never going to stop crying and I didn’t really understand why. After all I had had two surgeries. My surgeon felt he had got the tumour and sufficient margins. So what was I grieving?

I think with hindsight I also felt guilty. Why had I come through it all? Why was I different?

YSC Conference in Orlando

Posted on 27/02/2011 by AnnaGoAnna

Very excited to have received a bursary place to attend this year’s Young Survival Coalition conference in Orlando, Florida. I know how much last year’s conference helped me come to terms with my diagnosis. The workshops were well planned. The plenary sessions informative. Most of all was simply the camaraderie between attendees and knowing you’re not alone.

I’m also super excited to be able to meet up with some of my Phyllodes friends. Some were in Atlanta but more that I know online from the support group and particularly, Andi. Andi is someone I’ve mentioned before who was pivotal in my managing my diagnosis. Sadly Jolene is no longer with us ‘physically’ but we have a plan!

I need to remember that attending the conference is for me. Me personally. About me. I know I will be tempted to be looking at it as opportunities for the UK conference for Living Beyond Diagnosis and I’m sure there will be lots of ideas but sometimes I need to put my own health and mental health first.

I’m grateful for the long flight today. I can sleep. I worked through the night before leaving the UK to get everything up to date and ahead of myself so that I could put an ‘out of office’ message on and leave.

Once again Jenny is coming to the conference and will be sharing my room at the Park Plaza. Always great to catch up and particularly at the conference when it’s so easy to share concerns and worries with someone you’ve known for 20 years but who ‘understands’.

(Nearly) all good news

Posted on 14/01/2011 by AnnaGoAnna

Since the New Year I have already achieved a great deal with the organisation of the UK breast cancer event in November 2011. There’s still a long way to go but there have certainly been strides made in the right direction. I also have a diary full of meetings and teleconferences with so many key people, organisations and charities. The biggest aspect for me now is to obtain the charity registration status so that we can claim gift-aid on donations but also so that people (thank you to those who have offered) will be able to host fundraising events and collect the monies via JustGiving and the like. There are also a number of exhibitors and sponsors who will of course need the charity registration number to comply with their internal requirements. I cannot tell you how frustrating it is to be told that we have to raise £5k in order for them to consider the application, thereby proving we can raise funds. It’s also terrifically disheartening to think that it is a small sum but that I can’t afford to donate this myself as it equates to nearly 3 months’ salary from my savings! However I do know the value of what I’m doing and the knowledge that this annual event can go on to help so many people by providing information, support and importantly community is something that I continue to believe in and strive toward. I’ve not spoken to one person who has been touched by cancer that doesn’t commend me in what I’m doing.

So, following a mailshot to family and friends last week, I was really rallied by the response. I have received donations small and large from all around the globe, totalling just over £1,000. Thank you to everyone who has chipped in and also for your encouragement and support – it means a great deal to me to know that you’re backing me and also backing the event. Thank you also to two of you who have set up monthly direct debits to contribute an amount each month – again a really big thank you. If you wish to make a financial donation this can be done online via the PayPal link on www.LivingBeyondDiagnosis.com or send a cheque to me, payable to ‘Living Beyond Diagnosis’.

I also requested in my mailshot some help with some skills and services. I will, for instance, need a printer who is able to produce marketing material for us, and administration help or event management expertise. There are many aspects and I know I can’t do it all, so if there are any willing hands or companies that are able to help with any aspect, I’d truly appreciate it.

Finally, I requested that my mailshot was forwarded to others who may be able to support the event, have access to corporate sponsorship, perhaps speak at the event, take an exhibitor stand etc etc. We are, of course, only 6 steps away from anyone, so perhaps someone you know may know someone else etc. Do talk about the event and direct people to the website for information. Again I know that the event is great.. after all the US conference for young women affected by breast cancer is now in its 11th year and each year they have more people wanting to attend than there are places. I just have to make the first event a success!

OK now for the not so good news. You will remember that I told you about the lovely Trish… she was the first person I found with the same rare cancer and who introduced me to the Facebook group… I remember thinking that I was no longer alone and I think I slept for the first time in ages just knowing that. Trish and I met at the US Conference in February last year and we’re booked up to meet this year in Orlando… I can’t wait. Trish is amazing and encouraging and positive and has always been the first person I’ve told when I have a wobble about finding a new lump or feeling a pain etc. She told me about a lump last week that she had found and today saw the doctor. They’ve found a 2cm tumour. Until it’s removed and tested they won’t know for certain if it’s a recurrence of Phyllodes but given the speed at which it’s grown, it is suspected. I so, hope they’re wrong.

It’s hit me though as we were diagnosed at the same time, both malignant phyllodes and both in the same breast and had the same surgery. Only difference was the malignancy and sadly, I won that prize for highest!

Hey ho, my next scan and check up is in two weeks and then I get to escape on a girls weekend to Venice with the lovely Millie. What a treat.

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

National Rare Cancer Conference

Posted on 28/10/2010 by AnnaGoAnna

Since my foray with cancer I have done exactly what many of you would have expected me to… try to really understand more about Phyllodes, to ensure that there is some education on the part of the medics and the NHS, an acknowledgement that although rare, we do exist and also (really unsurprising bit) to put myself forward for posts whereby my voice can be heard and, I hope, make a difference for anyone else entering the world of cancer.

Through the South West London Cancer Network Partnership I was invited to attend the National Rare Cancer Conference today. It doesn’t cease to amaze me that I learn yet more at each event I attend and sadly that I sat amongst people who had been diagnosed with equally rare cancers and the frustrations that this lack of knowledge leads to for a patient.

Some quick facts that I learnt:

In 2007 in the UK approximately 300,000 people were diagnosed with cancer.
In 2007 in the UK approximately 140,000 people were diagnosed with a rare cancer.

Approximately 50 in every 100,000 people are living with a rare cancer in the UK.

Sir Mike Richards (National Director, National Cancer Action Team) was speaking at the event and asked us to consider a few questions:

1/ What is a rare cancer?
2/ What are the outcomes for patients with rarer cancers?
3/ What would you want to see in a Cancer Reform Strategy ‘refresh’?

Ray Murphy (National Cancer Partnership Forum) used this phrase, which I just love and struck a huge great big bell for me… “Add years to life and where we can’t, we should add life to years”.

We also heard from Andrew Wilson, Chief Executive of the Rarer Cancers Foundation and from Simon Davies, Executive Director of Cancer52 (so called because 52% of the UK cancer deaths are from the less common cancers).

We discussed how we could increase awareness to some of the rarer cancers, perhaps therefore ensure that people are referred tested and diagnosed earlier. We discussed an equality of care and how this can be improved. We talked about where we felt tests, diagnosis, treatment and post treatment areas can be improved. The most distinct area that we felt needed improving was communication and sharing of information between medical groups and also with the patient. An informed patient is, mostly, a happier patient and an empowered patient.

We were also told of a wonderful new resource available to doctors and patients. Information pathways for differing cancers. The information is constantly being reviewed and updated however there is already a great deal of information available at NCAT Pathways. You can look and download pertinent information and locate resources and support in your area. I suggest that if you come across a great service in your area you urge them to contact National Cancer Action Trust to be listed. All good resources deserves referral!

Personally I discovered there are many many rare cancers and then there are rarer cancers. It struck me just how rare phyllodes is and how those diagnosed are simply rarer than rare! However no matter how rare a cancer is, there should be a resource, specialist or information available. I’m on it!

Everyone I spoke to about Phyllodes and my experience was shocked that I hadn’t been referred to a sarcoma specialist.. apparently this should be done with any sarcoma diagnosis in order to obtain the best possible care and follow up…. and of course raise awareness that there’s yet another case of Phyllodes out there!

Paula Lloyd, Associate Director of the National Cancer Action Team spoke very well in summary of our discussion feedback but also provided us with an update on progress within the NHS and the Govt for understanding and improvements for those diagnosed with rare or rarer cancers.

My summary of the event was that there were most definately frustrations amongst people diagnosed with different rare cancers. Lack of information, resources and support is paramount. In addition, the lack of ‘joined up writing’ between the medical arms involved – why shouldn’t anyone involved in patient care have access to the information via technology? It’s insane that letters are typed, put in envelopes, stamped and posted to our GPs and that nurses and cancer care specialists don’t have the information at all. This means that everytime a patient meets someone new they have to repeat their story which can be emotional, tiring and perhaps misleading as the patient may not verbalise important facts that perhaps they hadn’t understood or were too much like medical speak.

However all that said, the people attending the conference are amongst the strongest, most inspirational and amazing people. Mostly they don’t have an axe to grind or a whinge to air but simply want to make it all better for anyone else. They have and do live with the most unusual symptoms and pains to live with but the loudest sounds in the room were from laughter and looking around smiles. Amazing.

I was so bushed by the end of the day that I headed off home (using 3 different buses) and it wasn’t until I reached my front door that I remembered I was meeting friends for drinks… quick change and out again!