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About AnnaGoAnna

Aunt~BubblesLover~Volunteer~Sarcoma~Phyllodes~Friend~BerkeleySqBenchOwner~Foodie~Glassmaker~Crafter

Foodies Festival in Clapham South

I didn’t know there was a food festival on this weekend.  Of course I’d noticed a few marquees being erected on the Park but no obvious signage to tell me what it’s for.  There’s often sporting events starting and ending there so marquees are regularly on the Park.

Apparently I wasn’t alone in not knowing what was going on.  Very disappointing on the part of the Foodies Festival‘s PR/marketing team.  I found out late on Friday when I received a tweet from an exhibitor asking if I was going.  It’s my local tube station and I pass that spot regularly.

However today I went along at midday having tweeted, texted, facebooked and spoken to a number of friends who live nearby or are foodies that I know would enjoy the event.

tumblr_inline_moi7wxQrkO1qz4rgp.pngOn arrival I was met by a very old friend, Andy Fussel who owns Fussel Fine Foods.  They produce some incredible rapeseed oil together with a number of infused oils, dressings and sauces.

Fuss&VerityHere’s Andy and my friend Verity at his stand.

I also met up with another friend, Nova, whom I met whilst doing the Leith’s Food Writing course.  Nova said she already uses rapeseed oils to cook with and particularly to create homemade mayonnaise.  Nova couldn’t resist buying a bottle and tweeting a picture of the glorious yellow mayonnaise she made when she got home today.

From this:

Fussels Rapeseed Oil

 

to this:

Rapeseed Mayonnaise

 

 

 

 

 

The ladies and I decided to wander  around the food outlets to find out what’s on offer and then to purchase some lunch.  The smells of wonderful creations was too much for any mere mortal to resist.

There was plenty to choose from… in fact probably too much choice!  We felt it would have been wonderful to have smaller plates and perhaps to lunch on a couple of choices.  Verity had roast pork sandwich; Louise chose a Lebanese wrap with felafel, hummus, halloumi and salad; Nova and I both chose the crispy duck wraps from The Duck Truck.

Having now eaten lunch we wandered up and down the stalls, sampling all sorts of goodies on the way.  Lots of chutneys, chilli oils and wines.  But also some interesting cheeses from No 2 Pound Street including a blue from Alex James’ farm and a delicious goats cheese and chilli from the Wobbly Bottom Farm.  I loved it so much I had to buy some for supper.

We made a quick stop at the Nitrogen Icecream stand:

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Verity and Louise had to then leave us and head off to the theatre.  Leaving Nova and I to explore the rest of the festival.  It’d be fair to say that we sampled something from most stands and managed to resist buying too much to take home… well except the most delicious chocolate from Doisy & Dam.  If you look at the ingredients, it’s really quite healthy and damn it’s tasty!

IMG_5586We also found the most delightful young chaps who were selling their dressing, or should we say ‘Granny Tigg’s‘.  A really rich dressing that I could imagine accompanying many more food types than simply salad.  Fish, meat, cheeses etc.  I just loved that the product was named after their Granny too.

There was plenty of entertainment at the Festival, ranging from DJ music, live bands and singers and, of course, the Rock Choir.

IMG_5582 There were also cookery theatres demonstrating Aga use, cake and bake, drinks, children’s cookery and BBQ.  We only poked our heads into the demonstrations but the audience certainly looked hooked!

Nova had a wonderful idea that she would love to do – cookery demonstrations at these festivals that showed off the produce being sold by the exhibitors, signposted the audience to buy the products there and also gave them a couple of recipe cards that incorporated the use of these products.  A great way to encourage people to cook with new ingredients and also help the exhibitors get their niche products to a larger customer base.

All in all a very wonderful day.  I left with a large bag crammed with goodies – cheese; chocolate; Fussel’s rapeseed oil and a couple of bottles of Fussel’s awesome chilli oil.

Congratulations Trisha and Rissa

Today in the sunnier climate of San Diego, California the amazing Trisha will marry her best friend and soul mate, Rissa.

Congrats

I’ve loved watching excerpts their relationship together being played out on social media.  Rarely are they ‘sensible’ posts but insights into lives filled with love and laughter.  Hula hooping sessions in supermarkets; photos of them both wearing crazy outfits; ‘secret’ videos made of one of them singing or talking to themselves; and also bonkers videos and photos of their beautiful dogs.  There’s a simple beauty and lessons to be learnt from loving life so very much and sharing it with someone who just ‘gets it’.  Trish’s posts never fail to amuse me (and I’m sure the many other friends she has on Facebook, Twitter and Instagram).

I discovered Trish via the new fangled internet and at a time when I had no information about the cancer I was diagnosed with.  I knew no-one, there was no support group I could attend and my calls to ‘cancer support lines’ at Macmillan and other organisations led to responses such as ‘we’ve never heard of Phyllodes‘, ‘we have no information‘, ‘have you tried ??‘ etc.  But always with a warning NOT to turn to the internet as I might find things that are untrue.

Ha, I laughed in the face of this warning… and it turned out to be the best thing I’d ever done!  I found Trish… who then scooped me up and introduced me to her friends and the Facebook support groups.

“Trish posted a message on her Facebook wall which just goes to prove that there are angels alive and amongst us:

…ATTN: My fellow phyllodes friends – request Anna Wallace on my friends list,she’s brand new and recently diagnosed with a malignant phyllodes tumor and needs our support! Let’s show her how beating breast cancer is done! WONDER TWIN POWERS ACTIVATE!”

It was literally moments before Andi messaged me and minutes before many others did too.  I can’t express how pivotal this contact was for me in my journey and how despite only knowing these ladies for a few years, they are some of my closest friends.  I also loved meeting them in Atlanta and Orlando and giving them GoAnna hugs  It’s always such a joy when we get in touch via social media, Skype, Facetime or cards in the mail.

I’m only sorry that I’m not able, due to other commitments including my scans yesterday, to be at the wedding in San Deigo today.  I will, of course, be there in spirit and can’t wait to hear all about the day.  No doubt we will also be viewing some crazy videos and hearing daft quotes too.

Congratulations Trisha and Rissa… Wishing you an incredible wedding day today and a life together overflowing with love and laughter.  xxxx

 

 

PPI Group – Imperial/Cancer Research – Meeting

A fascinating meeting this evening of the Patient and Public Involvement Group from Imperial College and Cancer Research.

We meet regularly however often we discuss aspects that I’m unable to share with you so I don’t post a blog entry about every meeting.  However some of the tweets/facebook posts about upcoming events or opinion may be posted from Living Beyond Diagnosis accounts.

Tonight’s meeting was slightly different to our usual discussions.  In that many of the agenda items related to artistic and creative projects that it is hoped will support, aid and influence both patients and the public.

I am unable to go into the finer detail but wanted to share a little about the items and ask for your feedback.

Artwork in hospitals and cancer clinics.  An artist has been commissioned to produce some artwork for display in a very busy hospital cancer clinic.  Tonight he was able to share with us a few of his ideas of what he would like to produce and also to hear our feedback and comments on the proposed work.  His medium is ceramics and his aim is for the artwork to be uplifting for patients, intriguing and engaging for those who may visit the clinic often and perhaps to also be further dimensional to include some more medical references and in particular research and cells.

No mean feat ahead of this chap.

What a wonderful project… for him to create and of course for others to enjoy.

The discussions this evening were varied.  Some were very much for it being engaging and uplifting.  Some felt that if it had medical references to research and cells it may be too much in this clinic but others thought it may bring about discussion and hope.  We discussed where it should be placed.. or perhaps could it transcend both the reception desk and surrounding walls?  Perhaps to include some clever lighting?  There are many considerations and much planning to also ensure that no matter where you sit or walk within the clinic you can enjoy the artwork.

What would be your considerations?

Video Project.  We were presented with a video project that has been taking place over the past 6 months.  Video cameras were given to 9 women who had been diagnosed with breast cancer (some with secondary breast cancer).  Each women was asked simply to record whatever they liked.  Some did a ‘talking heads’ approach of short interviews to camera; others were determined to show their families and life living WITH cancer; most of them showed bad times as well as the good; living with side effects; what the treatment and drug regime was like; and so much more.

The videos have been sensitively edited (with each of the women involved) and the task of how best to use the honest and open footage to educate the public and also support and inform others diagnosed.

The aim is that it will become part of an art installation where each video is played continuously on 9 walls of a gallery.  Thereby giving the ‘viewer’ the opportunity to watch all or part of each journey.

It is also hoped to edit the footage (approximately 2hrs for each lady) down to a documentary length and to be able to get it onto the TV.

We also discussed the possibility of some of it being used for the training of people working with cancer patients.  Medical professionals but also HR/employers.  Perhaps in a similar way to the GP Training film that I was involved in that is now part of the London Deanery GP training.

Where else do you think this could be used?

I suggested that in addition to the current footage perhaps another video project might be looking at the 360* surrounding the diagnosed.  For example taking a point in time of the diagnosis (perhaps being told of cancer, the start of treatment, surgery dates etc) and asking the diagnosed to tell what that moment was like as well as their colleague, husband/wife, child, parent, neighbour, friend etc etc.  To demonstrate that cancer affects much more than the individual and allowing others to understand.

Portrait Project.  A fascinating project created and considered by a lady herself diagnosed with secondary breast cancer and recently told that she is now in palliative stages.  Her background is in visual media and she would like to share her journey through photographs.  HOWEVER not of herself but highlighting the wonderful team of medical professionals that have been part of her journey, have been keeping her alive and indeed for whom she is truly grateful.  She would like to say thank you and for others to know that a cancer patient’s journey is filled with teams of professionals who work together for the best outcome.

She has put together a team of photographers, videographers, editors and other talented people who will be responsible for capturing each and everyone who’s been involved in ‘keeping her alive’.  From the nurses, breast consultant, sarcoma consultant, oncologist, heart specialist, plastic surgeon, wig fitter, receptionist, cleaner, anesthetist etc etc.  They are asked (and with her guidance) that each portrait will show the person behind the white coat as well as acknowledge the work they have done.

It is aimed that this portrait project will be finished and on display in SW London in September of this year.

Tissue Collection.  At this point, I can’t tell you everything about this agenda item.  However I would like your opinion please.

A great deal of cancer research is carried out on tissue samples taken from patients via a biopsy or surgical excision.  Sadly not everyone knows how to donate tissue to research projects and, historically, consultants are concerned about having discussions about research with patients so this may be overlooked.

My question to you is at what point and with whom do you think you should have a discussion about tissue collection for research purposes?  Was it discussed with you?  How did you feel about it?

Are you aware that cancer cells change during a cancer ‘journey’ and particularly if it spreads to other parts of the body.  There is therefore huge value in tissue samples being examined from each part of the body affected and indeed researchers feel that this information will help guide to the best outcome for individual treatment.

Another taboo that needs to also be overcome (in my opinion) is that of tissue donation after death.  Researchers again have huge value in looking at the tissue of a deceased patient.  If they are able to compare the tissue with that taken from a primary tumour and again any secondary tumours, they believe this may also aid them in understanding cancer development and further treatments.

Would you give your specific consent to tissue sample being taken after you death?  When and how do you think it should be discussed?

Breast Cancer Lecture Series.  There next in the series – “The Secondary Breast Clinical Nurse Specialist: her role in breast cancer patient care.  6-7pm 15th July at Maggie’s Centre, Charing Cross Hospital.

These lectures are in an informal setting and after the talk you are invited, and encouraged, to ask questions of the speaker.  Please do pass on the invitation to others.  If you’re interested in attending please email Kelly Gleason k.gleason@imperial.ac.uk as places are limited to approximately 20 people.

I’d love to hear from you about any of the points above.

Cirque du Soleil – Dralion

LargeContentImageTonight I had my Cirque du Soleil cherry well and truly popped!  Well to be honest it was about time and I think I’m the last one to discover the incredible feats of acrobatics that are performed by the crew.

The show is on at the O2 in London only until 8th June and I’m quite sure the tickets are scarce and hard to come by.  The O2 has been set up so that the performance takes place in the centre with a backdrop forward from the usual stage and presumably full of musicians, equipment and stretching mats!

We  were fortunate enough to be dead centre to the stage and only a few rows back so felt as if we were well and truly in the action.

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The story of Dralion draws the inspiration from Eastern philosophy and harmony between humans and nature.  There are four elements that govern the natural order and these are represented by colour in the performance; air is blue, water is green, fire is red and earth is ochre.

I think the philosophy however was lost on us and didn’t become any clearer throughout the performance.  I read the above when I got home!

Not understanding the storyline didn’t make any difference to my enjoyment and awe of the acrobatics.  Amazing!

Definitely worth going, if you’re able to get tickets, just to see the feat of human strength, contortion and showmanship.

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Bluebird Tea Company

As many of you know I love my teas.  I’m happy with a pot of PG and indeed friends visiting me in Australia were always requested to pack as many teabags as they could into their luggage!

But I’m also a great fan of more refined teas.  In my last job there was always my glass teapot and a selection of teas to choose from on or near my desk.  I love black teas, blends and interesting combinations including licorice and flowers.   Since my juicing, I’ve tried to steer clear of caffeine and am more likely to add a slice of lemon, lime or fennel to a mug of hot water or a few mint leaves.

HOWEVER I recently discovered the Bluebird Tea Company.  Tea Mixologists!  Whoohoo get that fancy title!

logo-newI love herbal teas too but not a fan of the fruity numbers.  So when I discovered some of the blends made by the Bluebird Tea Company I was a very happy bunny, particular favourite of mine is the Mojitea – which is peppermint and lime.

You can order their teas online OR take a trip to Brighton and find their shop amongst the Lanes.

We sampled quite a few teas today and although delicious, I had to purchase my fave to bring back home.  I was also delighted to see they blend their own Matcha and came away with a small pot of scrummy orange Matcha which I’m now adding to my juices.

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Brighton with the “girls”

Days with great friends are all the more magical when you laugh until it hurts.

Laughter FriendsToday was no exception.  A wonderful day in Brighton with some ladies that I used to work with in Londontown.  We met at the train station and after hugs hello, the laughter and incessant chatter began (together with a few “loving” insults – usually about age and the need for a toilet!)

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Our coffee break was somewhat interrupted by, ahem, good fortune.  That is to say a seagull using Jan’s head as target practice for a poop!  Ooh how we laughed.  But how can that possibly be good luck?

Isn’t there something glorious about being at the seaside and smelling the saltiness in the sea breeze?

Our day’s out are such a hoot, sadly we only manage to get together about once a year but each outing is so special.  Somehow we all revert to small children, giggling at the smallest of things, laughing at the craziest of things and generally reliving our yoooof!

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The lovely ‘young man’ who served us our lunch wasn’t quite sure how to take us…. more so after the second bottle of wine and raucous laughter.

After our delicious fish & chip lunch we headed along the seafront toward the Pier…. but stopping off for a ‘group selfie’ (Linda announced she’d NEVER do a selfie, errr) and a ride on the carousel.  Right from the off, Joan was saying she’d not go on it (grump!) but we managed to spot a small ‘seated’ area on the carousel for her to enjoy the ride.  Linda quite literally jumped at the horses and promptly managed to sit in front of the pole… clutching onto the poor horses’ ears.  Jan and I sat either side of Linda and laughed like drains as the horses went up and down… with each movement we thought we may lose Linda or the horse may lose their ears!  I loved seeing adults and children walk past and upon identifying that the laughter was coming from ‘ladies of a certain age’ riding the carousel, we would then see them exchange glasses and burst into laughter themselves!

Girls at the seaside

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On the Pier Linda and Joan decided they needed ’99 ice-creams.  We suspected this later that this may have been a schoolgirl error due to their being dive-bombed by seagulls looking for food.  As Jan and I walked away (too much laughter!) all we could hear was the screams and yelps behind us whilst they bravely continued to eat their ice-creams.

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It would have been rude for us not to go the arcade on the Pier.  And I couldn’t help but tweet about it to our ex-employer…

Tweet_LovellsWe were so blessed with the sunshine too.  What a stunning day, perfect for a day of coffee, lunch, walking, silliness, a spot of tea, great friends and oodles of laughter.

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The Sanctuary

Gosh I can’t quite believe the news.  Ok so I’m late to the party and completely missed the announcements a few months ago… but the Sanctuary Spa is closing!

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The Spa has been part of my London life for many many many years.  Just a few cheeky examples of times there would be:

I took Mum one year as a treat.  We had a marvellous day mooching between the jacuzzi, steam room, swimming pool and of course treatment rooms.  We lunched together and felt totally pampered by the time we left in the late afternoon.  I can recall Mum saying how special she felt at having been treated to this day, spending it in a fluffy robe, being spoilt and how she’d never done anything so extravagant before.

I’ve been there with friends for spa days.  When you absolutely need some down time.  I love that no mobile phones were allowed in the spa and that you it meant that you couldn’t check your email or receive panic calls from the office.

I’ve been treated to days there by friends.  Most recently when I helped a friend’s parents organise, pack up and ship their possessions overseas and sell their family home when illness and frailty got too much to do the task themselves.  What a treat for me though and quite undeserved.  A day of pampering, a glass of bubbles, pampering treatments and luxury.

I’ve used the spa as a retreat when surprising people and returning to the UK from Australia.  It was a gem.  I used to get a flight landing at Heathrow in the early hours of the morning.  Piccadilly line into Covent Garden with my rucksack on my back.  Arrive at the Sanctuary and check-in for a day of jetlag recovery and spoiling.  Sleeping on the loungers in the warmth of the spa, drifting off whilst watching the carp fish swim beneath me.

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Only for me to emerge from the spa in the early evening, rejuvenated, relaxed, jet-lag-free and ready for a party!

I was also a member of the Sanctuary Spa Gym for women.  It was probably in the early 90s when it first opened.  I remember it being wonderfully inexpensive and just the perfect place for me to work off some blubber (not that there was much then!).  I used to get the tube to Covent Garden in my gym gear early in the morning and do a class or gym session before a shower and short walk to the office.  Then I’d head straight back there after work for another workout, shower and change before going out on the town.  I can honestly say it’s the only gym I managed to get to 5 times a week – always with the promise that I was in town and near the bar afterward!  It was a great gym and I was so very unhappy when they finally realised they could charge a whole lot more than they had been to those of us who were there from the beginning.

So when they finally close the doors at the end of this month, it’ll be with a little sadness.  I’ve enjoyed many visits to the Sanctuary Spa with many people, many occasions but always feeling that little bit more wonderful for it.

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We shall all certainly miss the swing!

Terminal 2 – Trial End to End Trial

Several months ago I received an email from Heathrow Rewards (I’m on their mailing list as a frequent flyer through Heathrow). This email however wasn’t telling me that I can get cheap perfume or reduced commission currency but more particularly about the newly built Terminal 2 and it’s reopening. The email asked for volunteers to test the new terminal.

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They were looking for four different trial phases to check the parking, signage, flow of passengers, the check-in procedure, security, boarding, passport control, baggage and pretty much everything that you experience at an airport when arriving or departing. The aim of the test phases was to establish that all the routines, training and building works were designed perfectly for the many thousands of people that would be traveling through Terminal 2.

More importantly that any ‘problems’ (teething or otherwise) could be resolved before the terminal is open to the public. Volunteers would be rewarded with a poke around the new Terminal and a promise of a wonderful goody bag after every trial.

I was intrigued as to what was really involved in an airport trial. I already do customer reviews of restaurants, hotels, leisure/sports facilities, physios and bars looking at the customer experience so wondered how this would be different.

Sadly I was only available for one of the trial dates, the final date – today.

For the past few weeks there have been automated emails advising me a little of the procedure for the day. Registering for a car parking pass, instructions for parking and a little more about what to expect. In the last week, I’ve received emails telling me how well the project is going and how the trials have helped iron out teething issues raised. Apparently there have been over 800 issues raised through these trials and 620 of these have already been resolved. Let’s see how they do today!

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The first group of arrivals were called for a briefing where the day was explained to us. During this briefing there was mention many times that we’d have a fabulous day. Pet hate… don’t tell me, let me decide if it’s a fabulous day thanks!

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Then we left the briefing and headed for the next ‘briefing’ stage where we were given our first assignment scripts.

My script indicated I was a gentleman passenger flying alone to Taipei via Bangkok. Flying with Eva Air. I had to collect a trolley and then pick up two pieces of hold luggage. Checkin at a desk and then head through security to the departure lounge and wait my flight to be called. My flight time at 1pm and boarding time approximately midday.

IMG_5470The collection of the trolley, locating my two pieces of luggage, checking in and even security went very smoothly. (I’m a particular fan of the bigger security trays in T2). In fact I’d say I flew through all of this and then had time to kill in the lounge. Heathrow had laid on lots of drinks, snacks, muffins, chocolate bars, yoghurts and magazines to keep us fed, watered and occupied. Also traveling around the terminal were magicians, caricature artists and balloon makers as well as some arts and crafts competitions for the younger trial testers.

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I was chatting to a lovely gentleman who’d done two of the previous trials and was happy to do the final one to see the end results. He told me of a few of the things they’d picked up before and also of the contents of the goody bags (alarm clocks, travel plugs etc). Fortunately for me, he was also on the same flight journey and knew the ropes!

At about 11.30 there was a short presentation about the airport, a short speech from Brian Woodhead, Operations Director at BAA. We learnt a little more about Terminal 2. How the original Terminal 2 (AKA Queens Building) was opened by Prince Philip and Queen Elizabeth some 60 years ago and on 23rd June 2014 they will return to open the new Terminal 2.

We were then encouraged to take part in a short film about Terminal 2, dancing, singing and generally smiling that will be cut into a music video as part of the promotional film and also include other clips from the day and previous days.

As soon as this finished, our flight’s boarding gate appeared. Oh but we were also encouraged to pick up our packed lunch and take it with us on the journey. However the queue to pick up lunch was mahoooosive and many of my flight companions decided to grab lunches after this flight and before the next. Oh how we’d regret that decision!

We headed off in search of our boarding gate. Yes you know it – it’s the furthest gate to get to. Truly it is. A long long way, up escalators, double backing on yourself at different levels, walkways and tunnels and eventually to this bank of departure gates. It all looked very pleasant and functional. I’m not sure if there’s enough seating if the airport departures were at full capacity but they must have done their sums. Also a word of warning for anyone with weak bladders, small children or elderly travel companions – there’s quite a distance between toilets so go when you have the chance!

It was minutes until our flight was called and we were going through.

Oh except we didn’t really get a flight to Bangkok or Taipei!

Once through the gate we get to swap our flight instructions for those of an arriving passenger. This time I’m a young(ish) woman and arriving into Terminal 2 on a flight from Warsaw. Our instructions are that the flight was meant to arrive into Terminal 1 but due to lack of gates arrived here and we were then to make our way through to Terminal 1 arrivals to continue our journey.

Simples……

Or so we thought. Off we set. Down the escalators, along the passenger tunnel, round the corner, along travelators, following signs the whole way. Down another set of escalators and then we stop. There’s a queue. Quite a long queue and it goes around the corner in the tunnel. It’s getting hot down there. We’re not sure where we are. There’s no seats. It’s getting hotter. There’s no toilets. It’s getting hotter still. After quite a while a member of staff approaches our section of queue and advises us there’s an ‘incident’ and we’ll be moving along shortly. They then go further back up the queue and tell the same tale. Some time later, they return with others carrying bottles of water. Once again we’re advised that there’s an incident but this time we’re told that the firemen are dealing with it. Once again this message is told many times to differing parts of the queue. I make a comment that perhaps the PA system isn’t working in the passenger tunnel hence the individual Chinese whispers. All the time it’s getting hotter, people are now in search of floor space to sit down, some are getting worried that we’re cramped together in a passenger tunnel with nowhere to go but most of all it’s hot and we’re hungry (remember we didn’t have time to pick up our lunch).

IMG_5477Another chunk of time later we’re told that there’s one of the new air conditioning units has caught fire and although the fire is out, it is bellowing out pungent black smoke. This means that noone can get down the passenger tunnel and out of the location we’re being held in. Hmmm I think our testing may have found a flaw – surely there must be an alternate way out?

After another period of time we’re told that we’re going to be ushered back to the departure gates to await further instruction. Fine for a trial but in ‘real life’ you wouldn’t have arriving passengers mixing with departing passengers without going through security!

I won’t bore you with all the detail but suffice it to say that there was a lot of scurrying around by staff with perplexed faces and a few muttered swear words too. We were told to find a seat and then told we needed to evacuate the area and were once again bunched up waiting for an exit from this area, minutes later told to take a seat again. What a complete mess. Seriously, if this was the final ‘live trial’ I’m wondering what training has taken place or are the staff also ‘test volunteers’?

Soon we were again told we were on the move and OK to go. We went back down another set of stairs, apparently enroute back to the departure lounge. A long walk and several travelators, one of which came to a juddering halt with us on it. When we were all underground once more (different area to the last disaster) we came across two escalators and two lifts which would apparently take us back upstairs. Only one escalator and one lift were working…. eventually (yes you guessed it) the only escalator working stopped. We bunched up again, the staff member who was meant to be assisting us was heard to say “F’ing Hell”, an engineer turns up and attempts to reverse the escalator that isn’t running and fix the one that’s stopped. This takes yet more time and eventually although he gets both working in an upward direction, proceeds to only let groups of 20 or so people on to the escalators at each time.

It is quite some time later still that we find ourselves back in the departure lounge… and in search of that illusive lunch that we’d stupidly not queued for earlier!

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After stuffing a few bites of a sandwich we were on our way again. Back in character and as if arriving from Warsaw. We needed to get to passport control and then to head toward Terminal 1 arrivals area. When eventually we reach the passage way to the Terminal 1 arrivals, we’re greeted by security who advise us that the test member of staff has had to go elsewhere due to the fire.  There would be no further instruction scripts and that the trial has now ended early.

We headed for the exit. I was desperate to breathe air. We were stopped only briefly to have thrust in our hands a slip of paper with the url to provide feedback from today and our goody bags… or should I say a Terminal 2 umbrella and an empty Heathrow nylon bag. That’s all we got for the day… well apart from claustrophobia, heat exhaustion, tired feet and a feeling that we could have been doing something so much more interesting instead.

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So very very disappointed with the day. My observations were very simple:

The ‘bosses’ were there and shouting about Terminal 2 when it was going well… didn’t see them again later on.
If the passenger tunnel was the only route or arriving passengers at Terminal 2, what would happen if this event happened in normal business day? Or perhaps a passenger was taken ill in the tunnel? Surely there’s an alternate route?
How would it work if planes were constantly landing and disembarking yet more passengers into this tunnel?
Why did the staff not know how to communicate with the ‘passengers’?
Was there any communication amongst the staff to relay the procedure and manage the situation?
That’s a lot of dissatisfaction in return for an umbrella and nylon bag.

And finally… is it really going to open in a few weeks time?

Risk Assessment: Breast Cancer, Prediction and Screening

Progress Educational Trust are hosting a series of events relating specifically to breast cancer. The variety of the talks cover genetics, gene testing, prediction, screening and risk.

Tonight’s free talk is being hosted at UCLH in North London and supported by Wellcome Trust. I was told about this event by a couple of people, one of whom had heard of it from the US and suggested I attend.

I was particularly pleased with the variety of speakers for tonight’s event. A spectrum of experiences and also of opinion.

Event Title: Risk Assessment: Breast Cancer, Prediction and Screening

Agenda:
Introductions from the organisers (Sarah Norcross – Director of Progress Educational Trust) and the Chair (Dr Ann Robinson – North London GP and Health columnist for the Guardian)
Wendy Watson (Founder and Director of the National Hereditary Breast Cancer Helpline)
Paul Serhal (Founder and medical Director of the Centre for Reproductive and Genetic Health)
Professor Stephen Duffy (Professor of Cancer Screening at Queen Mary University of London’s Centre for Cancer Prevention, and Director of the Policy Research Unit in Cancer Awareness, Screening and Early Diagnosis)
Professor Klim McPherson (Professor of Public Health Epidemiology at the University of Oxford’s Nuffield Department of Obstetrics and Gynaecology)

Each speaker only spoke for 10 minutes and this was then followed by an extensive question and answer session.

Wendy Watson spoke about her own journey. She was one of the first women in the UK to undergo a risk-reducing double mastectomy. Her own research led her to make and insist up on this surgical decision. She then sought to set up an advice line and raise awareness for others facing a similar decision. She has published her book “I’m still standing: My Fight Against Hereditary Breast Cancer”.

Wendy told us that 1 in 200 have genetic damage which may imply a higher risk of breast cancer. Wendy believes that more should be done and available on the NHS for women AND men to discover more about their genes and if any mutations have occurred. If you are concerned about a hereditary risk of breast cancer, her organisation, National Hereditary Breast Cancer Helpline offer support, advice and in some instances, funding for screening.

Our next speaker Paul Serhal. Paul spoke passionately about his field. He was responsible for the UK’s first baby born following pre-implantation genetic diagnosis for BRCA1 mutations.

Pre-implantation genetic diagnosis (PGD) is a technique that enables people with a specific inherited condition in their family to avoid passing it on to their children. It involves checking the genes of embryos created through IVF for this genetic condition. More information can be found at Human Fertilisation Embryology Authority.

Paul was passionate about the importance of his work and what it means to the people he assists.  I was so pleased to hear also that they currently have no waiting time, have some funding arranged for suitable patients and can offer 3 cycles to each couple.  I know of people who have the BRCA mutation and have considered NOT having children because of it. This work would assist many.

The third speaker was Professor Stephen Duffy. Prof Duffy was part of the original team who adapted the Swedish two-country trial of breast cancer screening on which the UK’s national breast screening programme was based. He remains an advocate of our screening programme and is often quoted at times when people say that the screening has led to over diagnosis of breast cancer in the UK. One such quote “In particular, it is good news that lives saved by screening outweigh over-diagnosed cases by a factor of two to one“.

He spoke about the difficulties of screening for women with dense breast tissue. This is often raised when discussing reducing the screening age as younger women tend to have denser breast tissue. Prof Duffy said that often there is less lead time to diagnose breast cancer due to the difficulties reading mammogram results of dense breast tissue.

I was delighted to see that he has also just been appointed as Senior Investigator by the National Institute for Health Research

Our final speaker was Klim McPherson. Klim focusses his research on epidemiological methods and women’s health. He spoke about the factors that contribute to breast cancer. To give you some idea, I found this quote from the BMJ “Klim McPherson is the man least likely to accept an invitation to lunch at McDonald’s

His research has led him to look at and compare the US to the UK. He identified that the US certainly were far more radical with their surgery and treatments – however it wasn’t clear how much of this may be due to ‘insurance’ factors but felt not always necessary.

He was pleased to note that although breast cancer may be on the rise for being identified and diagnosed it was now much rarer to die FROM breast cancer.

So how can we avoid getting it?

  • We are getting periods at a younger age and having children at an older age.
  • He found that if you had your first period at the age of 11, you were 3 times more likely to get breast cancer than a girl who started their period of age 14.
  • There is a higher risk of breast cancer in women who have taken the pill or HRT.
  • 5 years of HRT doubles the risk of breast cancer.
  • Obesity post-menopausal makes you at much higher risk of breast cancer.

There’s a 20% reduction in breast cancer when in the breast screening programme i.e. every three years. It is imperative that people attend their screening when invited.

Q&A

There was then a long period for questions from the audience to the panel. As this was a free to attend event open to all, I was pleased to see a good variety of attendees and hence with the questions raised, I’ve stated who the questioner was.

Q1 Scientist – What’s the extent of genetics, epidemiology & screening connection?
KM – Yes they are connected. There is an Integrated Pathway (which is new) that is assisting with the integration of these three areas in determining healthcare.
Q2 Dr – If money was NOT a factor, what would a perfect screening programme look like for breast cancer?
SD – About right with the current screening programme i.e. 3 yearly mammograms. There is often talk of MRIs being better however patients don’t like MRIs and although they may be marginally more effective experience tells them that they produce more false positives so may lead to unnecessary surgery or treatment. Angular mammograms where using architectural distortion produces measurements of angular distribution i.e. slices of the breast may be more accurate but are complicated to read and produce.
Q3 Patient advocate – Spoke about the importance of trials, clinical and surgical. Asked what could be done to ensure more patient involvement and also of the recent DCIS trial.
Q4 Patient – What is offered to ladies under the age of 30 who have been tested positive for BRCA mutations by way of screening? Mammograms are not offered nor the option of going onto the normal breast screening programme.
SD – He reiterated that most screening is ‘pointless’ for people under the age of 30 due to the denseness of breast tissue.
Q5 Journalist from Pink Ribbon Magazine – To Paul asking more about the PGD programme and requesting information.
Q6(1) Clinical Geneticist – If we delayed puberty then this might/would reduce cancer… why can’t we?
There was much discussion about the ethics around this and although there was a consensus that it may reduce cancer, would it be ethical to do so?
Q6(2) – If each child was tested for BRCA at birth or perhaps a mutated bowel gene and found positive… could we delay their puberty knowing this may reduce their long term risk of cancer?
Again much the same discussion. Yes it may help but would it be ethical? What other implications may this have upon the person emotionally and psychologically?
Q7 Genetic counsellor – How many genetic counsellors are there in the UK and where are they? It was felt that many genetic scientists went on to become genetic counsellors and nurses in this field. However nobody was sure if there was a directory of genetic counsellors in the UK.
Q8 Patient – Why is breast cancer in younger women rising? What are the risk factors and how can people avoid them?
KM – He reiterated earlier periods and later pregnancy. He also discussed the increase in our use of plastic based products from an early life. Makeup, deodorant etc etc often contain oestrogen like products in the plastic and we’re putting this daily onto our skins from an early age.

There are two final events in the series. Sadly I’m unable to attend but please do go along ‘Risk Management: Breast Cancer, Business and Patents‘ on Thursday 5 June, and a concluding event on Thursday 3 July.

Thank you to the Wellcome Trust for supporting this series of events and UCLH for hosting these events by the Progress Educational Trust.

Edinburgh 2-6 May 2014

My youngest brother and his family live in Edinburgh. At the moment it’s the same country… well at least it’s also in the United Kingdom. However there’s a big vote soon where the Scottish people get to decide if they want to be their own little country and separate from the United Kingdom. My brother and his wife are all for this change. I however don’t have enough information to make an informed choice nor am willing to invest the time to unearth the information. However I do feel a little like a strict parent and believe it’s like having a teenager leaving home. If they want to go then they should go entirely… no borrowing money, bringing your washing home or popping in for dinner! We softie southerners will await the result of the vote. Oh one more parental comment – if you don’t get independence, will this be the end of it?

For simply ages, I’ve received little postcards, notes, Skype calls, video messages and phone calls from my Scottish nieces to say they’re missing their Auntie Anna soooooo much. They ask when am I coming to visit and how many sleeps it is until I do etc. So this long weekend (a bank holiday in both England and Scotland) I ventured across the border!

Such a cuddly pair of wee girls. The oldest aged 8 and the youngest only 4. My flight on Friday night wasn’t due in until late and by the time I reached the house it was nearly midnight. But not to be deterred from the earliest possible Auntie Anna cuddle,the girls had had a plan, a very cunning plan. Very early bath, early to bed and a promise that I wake them on my arrival for cuddles, warm milk and a midnight snack. Cunning eh?

Saturday morning started with two wee girls delivering a cup of tea to me and climbing into my bed for a chat and a cuddle. I love these moments with them. A little bit snoozy and chatty but excited about the day ahead.

In Edinburgh this weekend is a festival called Tradfest. The festival is in its second year and it aims to reintroduce Scotland to it’s culture, crafts, traditions and arts.

We headed up to the City Centre after breakfast to watch and walk alongside the May Day Parade. The parade itself seemed to be way more political than promised and we were constantly being forced to take leaflets about politics, war, religion or independence – surely not what was promised or intended for the festival parade? There were a few groups in the parade dancing, singing with bagpipes and drums etc but far fewer than the more politically charged paraders.

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The parade concluded at the Pleasance Theatre where we had read there would be crafts, music and dancing together with space for a picnic lunch. Again this didn’t match the promised description in the Tradfest brochure or website. We found a picnic bench and sat eating our picnic anyway… well until the table seemed weighed down with leaflets and someone pointed out that a sign above the girls head indicated that they had joined the communist movement! My brother wandered inside to see if there were crafts and other happenings worth visiting but came out disappointed once more. Such a pity as a MayDay Parade through Edinburgh would be a perfect platform to advertise the Festival and for tourists to partake.

My brother had heard that there was a family friendly storytelling event taking place in the afternoon telling the tales of the Edinburgh Beltane Stories. So shortly after lunch we headed to the Story Telling Centre to enquire that these tales were family friendly. As we waited for the start of the storytelling we made ourselves comfortable in the cafe with indulgent hot chocolate and cake.

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This event was in two parts. The first where a gentleman told the story. Fortunately my nieces are very good at watching plays and listening… a blessing as the story was slow and I’m not sure greatly rehearsed or the mixed audience totally considered. Sadly I don’t think we learnt a great deal from this part of the show. My youngest niece just seemed to be quite put out that it was sold as a storytelling play but yet there was only one person on stage – surely “this isn’t right”, she kept asking?

The second half was more interesting for us. A shadow play. After a brief break we returned to the auditorium to find a shadow box had been set up and a tale was about to be told via music, words and shadow puppets. This was much more engaging for the children and we heard and remembered the story being told.

Before supper time the youngest said she had to make a birthday card for her husband to be (aged 4!).  She’s got it all worked out.  Apparently they’re going to be in London and she’s going to live with me until the wedding day (when I have to do her hair and makeup).  When they’re married they’re going to live next door so they can pop in to see me whenever they want.  Anyway the poor chap’s birthday card was actually a picture of me and her big sister.  Recognise me?  I’m on the right…

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After the youngest headed off to bed, the 8 year old and I had some time for ourselves to play some games. It’s fabulous she’s just at the age when she’s started to enjoy board games, understand strategy and eager to learn some new things. My brother has a selection of the games that we had as children and we managed a few rounds of Connect4, backgammon and her first game of Mastermind. Let it be said that I certainly didn’t win them all!

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Remember this?

Sunday was a very exciting day in this household. Firstly my younger niece was heading off to the birthday party of her husband to be. I heard, at length, all about Joe. Plans for marriage and life together and that they are going to live in London in the house next to mine when they’re married. Until then my niece is going to live in my house and I’m going to help get her ready for her wedding day. She wasn’t sure when this was to be but eventually settled for when she was an adult… perhaps when she’s 8!

Secondly, my oldest niece was today taking part in the TradFest. She’s been learning to play the fiddle and her fiddle group are part of a parade along Portabello Promenade.

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My role in getting the girls ready was, of course, hair and makeup.

Here’s a little clip of Iola practicing her fiddle pieces with me before we headed out to the parade.

So after a little play on the beach and some ice-cream the very serious part of the day the performance and parade began. I’m soooo proud of her!

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Monday – My brother had arranged tickets to head to the Dynamic Earth exhibition in town. The exhibition was created for the millennium and apparently is only just hanging on with attendance down. We were keen to find out more, excited to see dinosaurs and hopefully going to learn something too. I was surprised at how much the tickets were – surely not!

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An exhibition for all ages. The exhibition is underground and I couldn’t help but feel a little claustrophobic at times. It seemed as if you couldn’t escape the route that was designated and that the only time you could use the toilets was at the beginning and end (surely a mistake when wanting to attract groups of people with children!). Points of the exhibition were interesting. The iceberg was, according to the girls, ‘incredible’. Sadly the dinosaur exhibition is apparently only on during the week and we saw a film about the wildest weather that turned out to the weather on other planets not our own! There were various points at which the children could turn a handle, press a button or talk to an interactive television but these seemed to be sparsely set around the route and not always worth the wait as other children got to them first. Sadly I don’t feel we learnt a lot and my brother didn’t feel that they’d be returning or recommending it particularly. What a shame and perhaps why it’s not doing so well.

Unsurprisingly the smallest niece was bored, tired and very very stroppy by the time we headed home for the bus.

Tuesday – my final day

Up early so that I could have breakfast with the munchkins before Iola headed off to school. She has a school trip today to a Mosque and I’m going to try to meet up with her when she arrives back from the trip for a quick cuddle before she finishes school and I head off to the airport.

My Auntie Anna duties aren’t quite over though. I walk the youngest to nursery and I hole myself up in a coffee shop for a few hours whilst she’s there. I asked her last night if she’d prefer to hang out with me instead of going to nursery for these few hours but she was desperate to see her friends as she’d not been with them for 4 whole days!

At 11.30 I’m back to collect her and she doesn’t stop chatting about what’s happened at nursery for what seems like an age. Eventually I’m allowed to get a word in and suggest we head down to the canal and find a cafe for some lunch together. She continues chatting all the way there!

We find a cafe, Mimi’s Bakehouse, which looks just the ticket for an Auntie Anna lunch and treat. The decor is beautifully done. A little like an old fashioned parlour. When our lunch arrives Celeste is quick to point out that there must be fairies here too… they knew her favourite colour was purple (her knife is purple) that her favourite drink is apple juice AND that it’s in a beautiful cup with a perfect straw, that the sandwich filling is her favourite – egg AND that the crisps are her favourite flavour. I mean how could they have possibly known that?

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After lunch we purchased some cakes to take home with us which were presented in the most adorable cake box.

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We rushed home in the hope that we’d get the chance to ‘bump’ into Iola outside school as her trip had returned a little early. Sadly we missed her so no more cuddles before I headed for the airport and home.