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.

Cheltenham

I’ve only been to Cheltenham a few times in my life but each time it seems to grow on me a little more.  I think it’s a pretty well kept secret, even from us Brits, as to it’s beauty, architecture, lifestyle and many events and celebrations.

Wikipedia lists it as – Cheltenham (play /ˈɛltnəm/), also known as Cheltenham Spa, is a large spa town and borough in Gloucestershire, England, located on the edge of the Cotswolds. It is the home of the flagship race of British steeplechase horse racing, the Gold Cup, the main event of the Cheltenham Festival held every March. The town hosts several festivals of culture often featuring nationally and internationally famous contributors and attendees, including Cheltenham Literature Festival, Cheltenham Jazz Festival, Cheltenham Science Festival and Cheltenham Music Festival.[1]

Gosh doesn’t that all sound so sensible?

Even the architecture looks grown up!

There’s even a Maggie’s Cancer Caring Centre in Cheltenham… and that too looks like a cool building.

Hehehe those of you who know me well know that I’m a fan of architecture.  You also know that when I’m visiting new towns or cities I often end up with black eyes… no, not because I’m out running (hahaha), but because I’ve got my nose in the air looking up and come a-cropper with uneven pave stones, signposts or bollards!

So despite my tongue in cheek comments, I’m quite at home in Cheltenham looking at the architecture, the town design, sculptures and garden landscaping.  There’s lots of space, lots of history and lots of well maintained areas that must make the people of Cheltenham very proud to live there.

I think I’ve got my eye on the 2013 Jazz Festival… hmmm May next year!  Who’s joining me?

Truly if you’re in the UK and want somewhere to explore, do think about visiting Cheltenham.

However for all the ‘cultural’ comments above I have to ‘fess that there wasn’t a great deal of culture surrounding this weekend’s visit… but then again there wasn’t really meant to be either!

PJ who used to be a neighbour of ours in Sydney is currently in the UK visiting friends and family.  He isn’t from Cheltenham, his family are in Essex.  However some years ago, he stayed with friends in Cheltenham for a weekend and by the end of the weekend, had a job and then stayed there for 3 years, in their basement!… I can so understand how this might happen too!  Cheltenham does have that draw for me too!

So this weekend I discovered a new part of Cheltenham.  One that doesn’t appear in Wikipedia.  The 40-somethings that are still out to party!  I suspect however that in ‘real life’ there may be less going out and partying and more responsibility and childcare.  But it’s great to see that there’s still a  good group of PJ’s friends who get together when he’s in the UK and let (what remains of) their hair down!

I think I’ll let the photos explain the evening… err except to say bourbon and coke and still in a club at 3am!

Loved it.  Fabulous evening.  Great bunch of people.  Lots of laughter.  Beautiful town.  Hmmm maybe I should move to Cheltenham?

Sarcoma Awareness Week

This week is Sarcoma Awareness Week.  I wonder if you knew that?  The problem with being a rare cancer type is that even if you have an Awareness Week, you’re only a small voice in the big noise of life.  Even if you are able to get others to share the awareness and retweet or repost about it in their own social networking, how many people actually read it or look at links?  However I, for one, have tried to share the word.  I’ve taken Sarcoma UK leaflets into hospitals and GP surgeries.  I’ve even taken to leaving a few on seats of trains or tubes or buses – and loved it when people pick it up and read it to fill a few minutes of their journey.  You never know but what they read may well help someone else or themselves understand a sarcoma diagnosis.

So, I’m going to give you just a few facts about Sarcoma (extracted from Sarcoma UK’s website www.sarcoma.org.uk) and I’d really really appreciate it if you could tell someone something about Sarcoma.

  • Sarcomas are rare cancers that develop in the supporting or connective tissues of the body such as muscle, bone, nerves, cartilage, blood vessels and fat.
  • There are around 3,200 new cases of sarcoma diagnosed each year in the UK.
  • Sarcomas account for about 11% of childhood cancers.
  • Sarcomas account for about 14% of cancers in teenagers.
  • Most sarcomas (approx 55%) affect the limbs, most frequently the leg.  About 15% affect the head and neck area or are found externally on the trunk, while the remainder will be found internally in the retroperitoneum (abdominal area).
  • There are around 70 different sub-types of sarcoma within these broad categories.  These sub-types are determined by the tissue of origin (the tissue in the body where the tumour originally formed), genetic characteristics or by other molecular analysis undertaken by expert pathologists.

Types of Sarcoma

  • Sarcomas fall into three broad categories:
  • Soft tissue cancers
  • Primary bone cancers
  • Gastro-intestinal stromal tumours (a type of soft tissue found in the stomach and intestines commonly known as GIST)

Causes of Sarcoma

The causes of most sarcomas are unknown.

Treatment

Despite the many different sub-types of sarcoma, the general pattern of treatment is similar.

Surgery is commonly viewed as the best option for a ‘cure’.  Chemotherapy will usually be used with bone sarcomas before and after surgery, although it is less often used with soft tissue sarcoma. The case for chemotherapy following surgery is uncertain with soft tissue sarcoma but may be suggested with sub-types known to respond well to chemotherapy.

There are circumstances when radiotherapy offers benefits, usually after surgery but occasionally at other times too.

The treatment plan developed by your doctors will be specific for you. You may meet other patients with a similar diagnosis but who are having different treatment but this is usual and nothing to be worried about.

Surgery should be undertaken under the supervision of a sarcoma specialist multi-disciplinary team, even when the surgeon is not a regular member of that team.

There’s a really informative video created by Papercut Pictures called “All in it Together – Living with Sarcoma” from which you will a small selection of different ages, diagnoses and stories.  Do take a minute to watch http://vimeo.com/papercutpictures/sarcomauk

 

Phyllodes is a soft tissue sarcoma…

 

Tonight found me at our London Sarcoma Support Group’s party to celebrate Sarcoma Awareness Week held at Maggie’s Cancer Caring Centre in Fulham, London.  An amazing vital group of patients, carers and friends.  The volume was high and the laughter loud.  There was also tears and supportive hugs.  It was lovely to meet some of the group members’ husbands, wives, children, partners who were also there supporting them.

Sadly one of the group had lost his wife only a few weeks ago and I hope found comfort in our company.  Another has just found out his cancer has returned and he is to start yet another course of chemotherapy to keep it in check.  BUT whatever was happening with each of us in attendance you knew that there was a strong bond of support there and a lot of giggling and laughter.  Despite my not having been to several of the recent monthly meetings due to a number of reasons, I was touched that so many of the group were pleased to see me and remembered what I had been diagnosed with, what I was off doing shortly after we last met.

You see I’m not a ‘support group’ sort of a person.  For those of you that know me well, you’ll know that despite my putting this blog up in the public domain, I’m actually fairly private about a lot.  For some reason, for me, I find it useful to be able to use this blog to be open!  I also know that my family can read it and know what’s going on but don’t need to speak about it or mention it – we’re not good at talking!

All that said, I enjoy attending the sarcoma support group… but I perhaps sometimes appear to the group as the one ‘who’s sorted’ and is ‘supporting’ rather than ‘needing support’!

Routemaster Buses and Route 38

Did you know that in addition to all the other lovely things we’re celebrating in the UK in 2012 eg the Queen’s Jubilee and the Olympics, we are also celebrating 100 years of the bus route 38 in little old London town.

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To celebrate the centenary of Route 38, Arriva London have partnered with Maggie’s Cancer Caring Centres in a project “Walk the 38”.  More information at www.maggiescentres.org/walkthe38 or www.arrivalondon.com/maggies.

Today however I had the absolute privilege and delight to be volunteering for Maggies on an old-fashioned Routemaster bus.  Arriva kindly waived the usual bus fare in lieu of us collection donations for Maggie’s and at the same time enabling us to speak to the passengers about the Walk the 38 initiative and also about the amazing work that Maggie’s Cancer Caring Centres provide to anyone affected by cancer.

The fundraising bucket was mighty heavy when I handed over my shift to the next volunteer and I know that every penny will be put to tremendous use for people like me who have and continue to use Maggies’ Cancer Centres throughout the world.

As well as being able to give back to Maggies a tincy little bit by volunteering for them today, it really didn’t feel like a chore at all.  It was blinking a-mazing!   I love love loved being on a Routemaster bus again, able to swing around the pole at the back of the bus, hear the sound of the engine and the dingdong of the bell as the conductor lets the driver know when to move off or stop at a bus stop.  I heard many many stories from bus enthusiasts about why they were there going back and forth between Clapton and Victoria on these special buses laid on for today.  But also to listen to the sharp intakes of breath that was accompanied by the broadest of smiles from people standing on the pavements or stopped at buses as they realise a real Routemaster bus was back on the roads.  We were asked many times if they were coming back into service but sadly they’re not.  They were iconic in London town and certainly a part of my childhood memories of coming into London and starting work in London.

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The drivers and conductors were also volunteers today from Arriva.  They had once worked on the Routemaster buses and loved them.  I heard their fond memories of incidents and laughs they’d had.  Apparently as Routemasters were faded out in London the conductors one by one left the job but not before they applied to work on Route 38.  Route 38 was the final one to have Routemasters and the day after the final Routemaster was put into retirement there was a tearful party for all the conductors and drivers.  Today however we had many of these men and women giving up their time just so that they could drive or conduct one more time.  As we’d pass another Routemaster on the road there would be a welcome wave and a shout across to an ex-colleague with a grin that could barely fit the face and eyes that were lit with pure excitement.

I think my abiding memory of today will be a simple one though.  One chap stood at a T-junction.  As we turned the corner he looked up, he looked again, his jaw dropped and only slightly giving way to a smile he craned his neck out to watch us as far as he could and we, those of us who were captivated by him watching us, could see a million memories flood across his face.

New – Walk38 video

Golf Live Volunteering for Maggies

Early start this morning and a race to get to Golf Live at London Golf Club, Nr Brands Hatch in Kent.

I’m volunteering today for Maggies Cancer Caring Centres and Elizabeth Montgomery Foundation.  The Elizabeth Montgomery Foundation was set up by Colin Montgomery in his mother’s name.  Colin has pledged that he will raise funds to open a new Maggies Centre in Aberdeen… no small feat and such an incredible offer.

Screen Shot 2013-10-15 at 17.02.01My job today is to tell people about the wonderful work that Maggies do, why they’re important to a patient and carer and also what they have meant to me.  We have a little golf challenge for people to participate in but most importantly it’s about spreading the word and allowing them the opportunity to donate.  It’s been a wonderful and fun day.  Emotional at times and I know that for some people they’ve found a new resource for themselves or others that they didn’t know about or understand.

Screen Shot 2013-10-15 at 17.01.46I also had the chance to meeting ‘Monty’ and hold the Ryder Cup!!

What an amazing difference a new Centre in Aberdeen will make for so many people.  I’m looking forward to seeing the plans develop, the building opening and hearing people’s feedback on the services offered.