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.

Beautiful Flowers

BCC FlowersAs you know, I attended the Breast Cancer Care’s London Fashion Show a few weeks ago.  I was fortunate enough to win one of the fabulous raffle prizes – “Grand Gesture” – flowers & chocolates.

I left the event with a Fortnum & Mason hamper packed with luscious Lindt balls.

The flowers I was to call the florist to arrange delivery.  In order to really enjoy them I chose  today.  I’ve been a tad excited to see what was to arrived.  A gorgeous floral display of seasonal flowers created by celebrity and Royal florist, Simon Lycett.  Beautiful.

The photos above don’t do it justice… truly incredible and such wonderful rich colours.

Breast Cancer Care Fashion Show 2013

It’s is fair to say that Breast Cancer Care have once again managed to host an incredible Fashion Show in London.  As usual there was laughter and tears.  Once again we are reminded that cancer can have a much bigger effect on life than treatment itself.  The fashion show models were, as always, ladies and gentlemen who had themselves been diagnosed with breast cancer and representing the many 1,000s of others.  Some a little nervous, others relishing the opportunity and sashaying with the best of them!  They strutted their stuff down the catwalk looking absolutely incredible.

I was invited to attend this afternoon as a guest of Breast Cancer Care as Issy’s +1.  Kelly was also able to join us so the ‘Three tits on tour‘ were back in town!  Both Kelly and Issy were models last year, as were a couple of the other ladies at our table.

IMG_4081I love the whole afternoon.  We had a very warm welcome with a glass of bubbly and then made our way to the Grand Ballroom.  It looked stunning.  All glitzy and glamorous (as did the guests!).  Opening the show with an act, the Dixie Dinahs.  Followed by a short and emotional welcome from Jane Hinnrichs, Chair of the Board of Trustees to tell us about Breast Cancer Care, their work and also about their new branding.

1045190_10151842512420306_978083735_aPersonally, I’m a huge fan of this new orange and pink.  I think it will stand out from the ‘pink melee’ and, for those of us who feel breast cancer is not pink and fluffy, I believe it to be a stronger message with these bold colours.  Well done Breast Cancer Care.

Our afternoon tea was plentiful with lots of delicious sandwiches, teas and cakes.  Ooh a happy place to be!

Edith Bowman gave a short speech about why she supports Breast Cancer Care before introducing us to the inspirational models for the day.

The models clearly had quite a task to change for the many themes and managed to look incredible in every one.  As always the chaps did a sterling job and my heart always goes out to them as their journey must also have been tough being diagnosed with breast cancer in a world of pink.  We loved the bright fashions for the first set (surprised not to see Mike Myers show us his moves on the runway).  The fifties set was also fabulous – loved the frocks by Candy Anthony.

1We were then treated to ‘Winners’ Enclosure’ and ‘Cocktail Hour’.  Finishing the fashion show with ‘Gold!’.

Breast Cancer Care Fashion Show 2013

After the fashion show had concluded we were introduced to Breast Cancer Care’s new campaign about body confidence.  It’s an issue that affects so many people following surgery of any type.  Living with scars, one or no breasts, mis-shapen or ‘damaged’ bodies can be devastating to many people and have a huge impact on their lives, relationship and outlook.  Learning to accept your ‘new’ body can be, for some, bigger than the diagnosis.  The new campaign aims to show others how some people have dealt with their new body image.  Bring about a discussion and for some, allow them to open up and discuss what they see under their clothes.  Issy was one of the models and you may have seen her image on buses, posters and in magazines.

Do take a minute to look at the video here

IMG_4091images-7The afternoon finished with an auction.  Then the results of the raffle – I won a prize!   A hamper full of chocolate and flowers (to be ordered) from celebrity florist Simon Lycett.  What more does this girl need?

Breast Cancer Care Fashion Show 2012

Breast Cancer Care are a charity who do so much for anyone worried about, diagnosed with breast cancer and also those caring for people with breast cancer.  They are a small charity who do so much.  They address issues that seem to fall through the net too, for example younger women diagnosed with breast cancer, moving forward after your diagnosis and also those who are diagnosed with secondary cancer.

I know from my own personal experience of breast surgery from my phyllodes tumour how much body image and the psychological and emotional aspects of cancer can be debilitating.  I also know from friends how much Breast Cancer Care have been there for them during recurrence, mastectomies, body image, terminal diagnosis, secondaries and simply being ‘too young to get breast cancer’ but having it!

Today was Breast Cancer Care’s London flagship event.  Each year they host a fashion show in London and other locations around the country.  There are a couple of aims of this fashion show – the most obvious perhaps is fundraising.  The less obvious are the confidence that ladies and gentleman with breast cancer get from seeing the models on the catwalk.  All the models have been diagnosed with breast cancer.  Many of them have had mastectomies, some with reconstruction. For many of these ladies and gentleman to walk tall down the runway looking so splendid is such a huge achievement and a great hazzah to the cancer they’ve previously been diagnosed with.

IMG_4061

This year my friend, Fiona Macrae who set up an insurance company, Insurance With, which offers travel insurance to people with long term conditions after her own diagnosis, and I wanted to go along and support two of our friends, Kelly and Issy in their debut catwalk!

We had tickets to the afternoon event and frocked up accordingly!  Our table was right by the runway so we had the perfect spot to see the models.  What an incredible inspiration to see Kelly, Issy and all the other models walk proudly and strutt their stuff.  Amazing.

Breast Cancer Care Fashion Show London 2012I’m so very proud of Kelly, Issy and all the models for taking part in the Show.  An incredible afternoon, wonderful afternoon tea and bubbles, fabulous auction items and best of all, such inspirational ladies and gentlemen models.

Well done Breast Cancer Care and thank you.  Roll on next year!

About the Girl

There’s always a lot of discussion about looking and feeling good after breast surgery. It’s hard enough to find a decent bra or swimwear to fit when you’ve not had surgery but afterward can be a minefield. I remember my foray into finding anything on the high street to wear straight after surgery. Heartbreaking and difficult.

Through Kelly, I’ve discovered About the Girl. Last night was their launch party at their new showroom in West Sussex. I attended about the girl . If you’ve not found them yet, they’re also online and stock some gorgeous lingerie and swimwear for mastectomy ladies… they will also adjust/customise just for you too.

Oooh they also stock a range of stunning swimwear for people without having had surgery!