I return to John McLaughlin’s musical talent

jm4d_profilepicAs you know recently I went through my vinyl records that had long been boxed up and stored away.  I played them all.  I recorded to my computer only some.  I re-played several.  Most records took me back to a place I’d once been, a time when things had been different and memories and people from yesteryear.

One album in my collection was by John McLaughlin.  It wasn’t until I played it that I remembered.  Thank you MattM and MarkP for introducing me to the legend that is John McLaughlin.  How he manages to achieve so much from only a few strings of a guitar is utterly incredible.  Jeff Beck referred to him as “the best guitarist alive”.

So how delighted and surprised was I to see he was playing at the Southbank in London this evening as part of the EFG London Jazz Festival!

5b982726f16b284ecd8a2740 John McLaughlin johnmclaughlin He may have been playing for over 50 years but blinking bananas he’s still got it! I think I sat mesmerised by not only his incredible guitar talents but also those of the other musicians making up the 4th Dimension element of his touring group.

I think this tweet pretty much summed up my evening.. “@alunvaughan UNREAL! I’ve seen some guitarists in my time but @jmcl_gtr blew them all out of the water! Magnificent!”

Jazz Journal – ReviewThe Arts Desk – Review

A woman’s mind is as complex as the contents of her handbag…

A woman’s mind is as complex as the contents of her handbag; even when you get to the bottom of it, there is ALWAYS something at the bottom to surprise you!
~ Billy Connelly

Recently I was doing some more sorting.  This time through a big bag of old handbags.  Not mine but my Mums.  I’d forgotten about them.  The bag had been hidden in the bottom of a wardrobe in the spare room.

Nothing unusual about handbags you might comment… but… as I sorted them through I spotted a pattern.  Mum kept the same things in EVERY single one of them.  A mirror, scissors, pencil, comb and a tape measure!

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I now have a plethora of each and every one of these items!  I ‘get’ most of them… but the tape measure???

I also discovered a few other fun things…

AAAA Membership

MumMum

IMG_7418Membership Card to the Elvis Presley Fan Club in Johannesburg!

and a note from a man I’d never heard of!!  (errr no photo for this one!!)

Most of us may move the ‘important’ items from bag to bag.  Perhaps a mirror, an umbrella, a wallet or an address book.

What do you keep in every handbag that might surprise or confuse?

 

Art Exhibition – The People Who are Keeping Me Alive

Many months ago one of our PPI Clinical Trials group at Imperial Cancer Research, Rina, presented to us an idea.  Rina was super excited and you could see such animation and fun when she explained what she was thinking of.  Rina was also so clearly passionate about demonstrating that during her care and treatment for cancer she had been looked after by so many staff.  As Rina said we often only talk of our consultant or nurse during treatment but there are in fact so very many others who have looked and continue to look after us.  The receptionist, the phlebotomist, radiographer, radiologist, surgeon, anesthetist, appointment maker, chemo nurse, clinical nurse specialist, research nurse, porter, scientist, cleaner, hospital catering team, etc etc.  In fact Rina was able to name so many not only by title but by first name I, for one, was terrifically impressed!

Rina-hero-hero

Rina wanted to honour those who had been keeping her alive.  She wanted to show the world that there were so many more involved than just her surgeon or nurse.  She wanted to demonstrate that they all had names (not just titles) and also that they had passions and loves outside of the environment that she knew them, ie the hospital.

Tonight was the launch party for the exhibition.  A time when all those of us to see the idea become a reality.  For Rina to be able to get her ‘team’ in one location and say “Thank you for keeping me alive”.

Clinfield 2014

The exhibit is kindly sponsored by Cancer Research UK and will be on display at The Cancer Research UK Imperial Centre in South Kensington until the end of November.  If you’re in London, do make time to visit.  More info – here

Because of Rina’s exhibition, Cancer Research UK have launched a campaign on twitter for YOU to nominate your hero.  Who was your hero?  Nominate them using #RinasHeroes and @CR_UK.

Clinfield Conference – speaking!

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The Clinfield Conference provides an opportunity for research nurses, allied healthcare professionals and all research practitioners to get together in a formal setting.  The Conference programme is put together with care to provide sessions to share good practice, things that worked and didn’t work, speakers talking about their career development pathway, patient advocates talking about their experience with research and how they can assist the researchers, debates and also invaluable time for networking.

I have previously been invited to attend this Conference twice by Kelly, who also leads our PPI Clinical Trials Group at Cancer Research Imperial.   In April this year I received an email, from Kelly, asking if I would like to do a session, as a patient voice, for either a panel or a debate on the use of social media for recruitment to clinical trials.  Of course, I said ‘yes’, put it in my diary and forgot all about it!

Conference Agenda

09:30-10:00 Registration

10:00-10:10 Welcome Professor Janice Sigsworth

10:10-11:00 Why clinical trials and the people who run them matter. Key Note Speaker: Mr Charles Sabine

11:00-11:15 Inspiring the next generation through student placements.  Mary Harrison

11:15-11:45 Coffee

11:45-12:45 The Great Debate:  The use of social media enhances dissemination and engagement in clinical research.

Chair: Gordon Hill Debaters: Teresa Chinn- We Nurses, Matt Ballentine, Dr Les Gelling- REC Chair, Anna Wallace- Patient Representative

12:45-13:00 Considering a Masters in Research? My experience so far. Stuart Gormley

13:00-14:00 Lunch

14:00-14:25 Stratified Medicine:  the challenges and ethical dilemmas genetic testing brings to research.  Professor Martin Wilkins

14:25-14:45 Can I retweet please? Health research recruitment and the Twittershpere. Professor Heather Skirton

14:45-15:15 Coffee

15:15-15:30  Regret in patients with acute and chronic conditions recruited to stem cell clinical trials Katrine Bavnbek

15:30-15:45  Beyond Research Delivery to Design and Dissemination- Extending the Role of the Research Nurse Caroline French

15:45-16:00 Closing Remarks and Award Presentations Professor Christine Norton and Kelly Gleason

The whole conference was inspiring but none as moving as Charles Sabine’s presentation.

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Charles spoke candidly about his career as a TV journalist where he spent many hours and years reporting from war-torn parts of the world.  No doubt an incredible career and something that few of us would be brave enough to do.  But then he spoke about something way braver than his time in journalism.  He had the whole audience hanging on his every word and, at times, wiping a tear away.  Charles’ father was diagnosed with Huntington’s disease (AKA HD).  He watched as his father ‘disappeared’ before his eyes.  From an intelligent, articulate and ‘alive’ man, he became reliant on others for everything.   HD is a progressive and hereditary disorder for which there is currently no cure.  Charles and his brother have had genetic testing and both tested positive.  Charles’ brother, John, an incredible successful lawyer, is now battling this fast moving and progressive disorder.  For the moment, Charles has no signs.

Charles, like so many of us when we are told ‘there is no cure’ ‘there is no research’ or ‘you’re unique’, uses his experience in journalism and as a son, brother and person affected by HD to a different use.  He is now a spokesman for freedom of scientific research, and sufferers of degenerative brain illnesses (including HD).  He has been talking about his experiences at conference such as this, raising awareness, rallying and organising groups of people affected by HD to speak up and get involved.  He spoke of HDBuzz, Huntingdon’s Research News.  He also spoke about The Huntington’s Disease Youth Organisation (HDYO) where younger people diagnosed with HD are able to get together in person, online, via social media to support one another but also to push for changes and research.

Charles’ presentation without any hesitation was moving.  I wasn’t familiar with HD.  I am now.  But what I also see is the impact that a patient voice (albeit one from the tellybox) can have on improving awareness, patient care, support and, the everso needed research.  Charles’ experience with HD is similar to other rare conditions and diseases and what Charles demonstrated was that by using social media, by using our voices we CAN make an impact.  Research may not be within our lifetime nor may it make a difference to our own health but to KNOW that we  have made a difference for future generations and that, particularly in the case of hereditary disease, our children or grand-children will have the benefit of our involvement now.

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I felt for Mary Harrison, the next speaker on the podium.  How could anyone possibly follow Charles’ presentation?  She did, brilliantly.

Mary is clearly passionate about encouraging and enthusing the next generation.  About engaging all new students in research so that it becomes part of their ‘everyday’ no matter which medical field they end up in for their career.  Research should be second nature to consider for each and every person, patient and non-patient.  Without research medical advances cannot be made.  Healthcare improved and a better and longer quality of life gained.

It was wonderful to hear some of the initiatives and working methods that have been implemented and that Mary is championing.  I hope that others attending the conference were able to go back to their workplaces and implement similar projects.

10690252_790103731037931_4089365723065417337_nAfter a short coffee break, it was time for the Great Debate: “The use of social media enhances dissemination and engagement in clinical research”.  I was on the stage!  We had four debaters, 2 for the motion and 2 against.  My job was to debate against the motion.  The chair for this session, Gordon Hill, introduced the debate and asked for a show of hands for and against the motion.  There was one lonely hand waving ‘against’.

10687141_790104117704559_3378078328530090806_n10421999_790103884371249_2477100869151685393_nTeresa Chinn, @WeNurses, presented her arguments FOR the use of social media.

Compelling arguments and we could see a great deal of nodding from the audience.

Dr Les Gelling @Leslie_Gelling was first to present his arguments against.1932271_790103911037913_2057804842392007702_n

Again I looked out at the audience and saw nodding and acknowledgement of the points Les raised.

10351655_790103937704577_40107761402128731_nMatt Ballantine @ballantine70 stood next to argue FOR the usual of social media.

 

1538625_790103957704575_6793728141737878822_nLast to speak was me.  I questioned if you could really engage people with 140 characters and provide enough information for them to make an informed choice.  I queried the use of acronyms to reduce the character size reminding the audience that patients and carers don’t yet know what these acronyms mean.  I was also able to mention ‘Phyllodes’ in my short presentation 3 times… hehehe a room full of researchers have now heard of our rare cancer!

Without a doubt the debate was difficult.  All four speakers are active users of social media and see the value of the medium for dissemination of information.  Les and I had discussed before the debate how it was difficult to sound passionate about  an argument you didn’t believe in.

In the summing up, Les did a wonderful job of putting doubt into the audience’s mind.  About ethics, confidentiality, understanding, interpretation and audience.

1486625_790104004371237_6015179206767551081_nThere were some very interesting questions from the floor and even some examples of where the use of social media had worked already.  Namely when recruiting young mothers to a trial via MumsNet.

Finally a show of hands from the audience to see who was now FOR and AGAINST the motion.  Les and I had won the debate – there was now no longer a lonely arm waving but a large number in agreement with our arguments.

I must admit to despite winning the argument feeling a little disappointed.  I am in favour of the use of social media for dissemination of information.  However what was highlighted in the arguments and questions was that perhaps we’re not quite there yet.  Not everyone feels comfortable with social media.  Not everyone uses it.  We’re not yet au-fait with using social media effectively nor do we know the true impact of using it.  Social media is still in its infancy and as such there is still a great deal to learn.

It should be something that is used for some aspects now.  It is somewhere that we can learn more and engage and encourage people to become active in research.  It is somewhere that can clinical research trials can be advertised or links to recruitment programmes be discussed.

I think the debate was wonderful as it clearly made the audience think more closely about their use of social media.  It will hopefully mean that it can be used as ‘part of’ a recruitment project but with consideration for confidentiality, ethics and understanding.

 

The afternoon sessions at the conference were fascinating.  It was wonderful to hear from various people about their passion for research, inclusion, consideration of patient side effects and quality of life but mostly about the willingness to share with others their experiences (good and bad).  I know that all those attending this conference will have left with a new understanding of some aspects of research and I’m quite sure many will have been implementing changes or looking at the way they’re currently operating to improve the research landscape.

I’m passionate about research.

It should be part of everyday conversation.

Sadly most of us only think about research when we or a loved one is ill.

Research is also conducted on people who are well with the use of surveys, spit or blood samples.

Research doesn’t have to be invasive or require the taking of medication.

YOUR involvement in research could make a difference in the future.

Tower Poppy Removal Team

I was pleased as punch when I received notification that I had been allocated a shift as a volunteer on the Tower Poppy Removal Team.

Tower Poppy Removal1I had been so incredibly moved when I visited the Poppies in September.  The representation of all those who lost their lives during WW1 by a sea of vivid red ceramic poppies.

Each poppy being planted one by one to create a beautiful and temporary remembrance.  The Tower of London Poppies has become a ‘destination’ for so many visitors from overseas but also around the UK.  So many photographs being displayed on social media and in the press.  Now, as was intended to display the fragility and temporary nature of life, the exhibit is being carefully plucked from the earth one by one, dismantled, washed and packed up dispatch.

The role of volunteer was fun, a small fun team within a large volunteer group working around the moat.  Trying hard to not chip or break each poppy whilst removing the washers and stoppers that had held the flower in place so well.  Our little team removed poppies first and then changed duties to separate the washers, rods and stoppers.  Other teams were on cleaning duties and others packing the poppies into boxes.

Tower Poppy RemovalIt didn’t go unnoticed amongst our team of volunteers that our task was also incredibly moving once again.  I was acutely aware that with every poppy we were removing it represented someone loved and lost.  There was also the feeling that we were handling the ‘last remains’ of those people and that they were being dispatched to the loved ones left behind.

Truly an honour to have been part of such a moving and beautiful remembrance tribute.

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Lovely old crackly vinyl

Indulge this old bird for a second, particularly any youngsters reading this post…. I need to talk about my love for vinyl.   To avoid any confusion, I mean vinyl records!!

Err whaaat?

You may have seen some in a museum.  They look much like uber sized drinks coasters with grooves on them.  Larger versions of CDs really but they have music on both sides.  You need a turntable to play them.  They work by you lifting the ‘arm’ and placing the ‘needle’ carefully onto the vinyl record.  Once done, without knocking the needle or player which may result in a screeching sound, the music will begin to play.  The best ones, for me, are the records that have become slightly crackly and clearly have signs of being overused and well-loved tunes.  They’re fragile.  You can’t play them in a car and to transport them was a nightmare.  Certainly no listening to them as you’re walking to work or on the tube.  Hehe that was where the Walkman came in, if you were lucky enough to be able to afford one you could listen to your ‘chart hits’ on a recorded cassette.

Vinyl comes me in three main sizes (or at least in my collection they did)….

IMG_7083Three record covers showing the sizes.IMG_7082The three vinyl record sizes amongst my collection.

So far so good?   Indulge me further…

I’ve finally opened up the couple of moving boxes that have been packed up since 1998 when I left for Australia.  They were stuffed with vinyl records.  I haven’t opened the boxes until now as I didn’t own a record player anymore but still I couldn’t bear to part with the vinyl.  There’s something so special about vinyl records.  Unlike most people I don’t remember what was my first record I bought or where – although I suspect it may well be in this collection somewhere.  I do however remember saving pennies to buy the latest music.  Venture into the record shop, spend hours searching it out, listening on headphones to endless other records I couldn’t afford and finally handing over my pocket money for one single record.  Leaving the shop carefully carrying my new purchase and eager for it not to be knocked or bent before I had the chance to play it.  My choice of record was probably influenced from my listening to the Sunday night charts show.  I’d often record the show onto a cassette tape.  It was a tough job.  On a Sunday night you’d be glued to the stereo with your finger on the pause button listening intently to the top 40.  Cleverly you’d pause the recording between records so as to avoid the chatter of the DJ making the perfect mixed tape to listen to all week.   I’m quite sure that hour or so was a blessing to parents around the country who got peace and quiet whilst we carefully listened to the chart show in our rooms.

What a total indulgence these past few weeks have been for me.  I’ve bought a record player that records to my computer.  Importantly I’ve been able to listen to each and every album in turn.  Most of them hold great memories for me.  Many of them make me cringe.  I can honestly say my collection is varied and eclectic.  I’ve loved it…. I’m not sure my neighbours have though??

IMG_7080 IMG_7081I also discovered a host of singles.

IMG_7084Again varied, cringeworthy and brilliant.

Amongst them one single that I remember playing over and over to annoy my big brother…

IMG_7087Yes the B side… My Brother!

One of the first singles I pulled out of the box when I first started this job was this one:

IMG_7085Couldn’t have been more perfectly timed as I discovered that I was playing it when Issy passed away.  Her favourite opera and one that we’d promised to see/hear in Milan in January but due to health issues didn’t make.

Crazily, I also discovered several flexidiscs which were presumably given away free with newspapers/magazine etc:

IMG_7086And even crazier was this flexidisc.  Issued by the Conservative and Unionist Central Office:

IMG_7088Oh yes… a flexidisc that was sent to all households in 1964 to help ‘swinging voters’ decide who to vote for in the election.

“Songs for Swinging Voters” [features on Side 1: John Citizen; Nationalisation Nightmare; and Four Jolly Labourmen. Side 2: One Man Band; Poor Old Jo; and John Citizen] a six-track flexidisc of anti-Labour singalongs issued by Conservative Central Office

If you want to listen to a couple of the tracks I’ve uploaded them to my Soundcloud – John Citizen and Nationalisation Nightmare.  Hmm I wonder if this technique was to be used again it might work… perhaps instead of a flexidisc they could send the songs to every itune account for free.

There has been a substantial amount of ‘cheese’ in my collection and I’ve loved relistening to them all.  I’ve recorded quite a few albums and singles so that I can now listen to them through my i-devices.  I’ve even recorded the entire Wind In the Willows story perfect for long car journeys.  I am so very much looking forward to listening to them over and over and over again, crackle and jumping and all.

As for the vinyl.  I think it may be time to deliver it to my big bro, together with the record player and recording device so that he can indulge in our past for a while too.

A novel way to celebrate 5 years since diagnosis

When Greig Trout, the author of 101 Things to do when you Survive, messaged me to let me know he’d nominated me to take part in a BBC documentary, we had no idea that the filming would take place today, my cancerversary.

I’ll be honest and say that I have been more than a little nervous about doing it at all and the idea of ‘putting myself out there’ for all to see on the tellybox has induced more than a few sleepless nights.  Greig had been asked to do the show and would, no doubt, have been brilliant.  But the lure of more travelling, proving there is life after not one but two cancer diagnosis, inspiring others and raising awareness was too great for him and he jumped on a plane to Broome in Australia instead!

I can’t explain too much about today’s filming as the BBC want, of course, to have an impact with the show when it’s aired in January.  My day started at 7.15AM when a taxi arrived to take me to the first filming location in the City of London.  Stupidly I wondered how I would recognise the team I was meeting… until I walked in to a coffee shop to see cameras and lights set up and waiting for my arrival!  (blonde moment).  Nervously I was interviewed on camera.   All the time worried about how I would look, whether I would do a good enough job and trying not to be emotional.

The next part of our day was crucial.  I was to conduct an ‘interview’ on camera.  I needed to be polite but to needle.  I needed to enquire but to listen.  I needed to ensure my questions would inform and that the answers received were useful.  I needed to be Robert Peston but hope that little old me was an OK substitute.

The final part of the day was about me and filmed at home.  ‘About me’ is never something I’ve been particularly comfortable with.  I’m usually taking the photos or choose to hide at the back of group pictures.  Unsurprising then that when asked by the BBC to find some holiday snaps of me, I had diffuculty locating ones with me in them!  Ironic to think I am spending the day being filmed!  I was interviewed on camera about my diagnosis and experience with having cancer.  Having been in control of my emotions all day, I wonder if I might seem emotionless on camera.   We also filmed me doing normal things at home, meeting a friend, juicing, writing this blog, looking at holiday photos etc.  All to set the scene about me in the documentary story and why the topic is so important to be aired.

BBC Crew(In my kitchen!)

A very long day (11 hrs) and I was exhausted and emotional by the time the crew had left.  Ironic in so many ways.  Not least that the filming was taking place 5 years on from when I heard that dreadful phrase “You have cancer”.  A milestone I marked with telling my story to camera.  Hopefully the film will achieve changes in an industry that takes advantage of those who are living with a long term condition.  Hopefully it will raise awareness of the issue and signpost those affected to the right place at an affordable price.  Hopefully it will also raise awareness to Phyllodes by the mention in the piece.  Hopefully this mention will mean that others diagnosed with this rare cancer will not feel alone and find others in the Phyllodes Support Group.  Hopefully I did the piece justice…

Let me know : Rip Off Britain being aired in January.

PS  Apologies about the ill-fitting jeans… my excuse – I’ve lost weight and got dressed in the early morning darkness!

Wolf Hall – Bring up the bodies

OK so I’ll confess to not particularly liking period drama.  I’m probably one of the only people on the planet who’s not seen any Downton Abbey episodes.  I don’t enjoy Shakespeare nor particularly understand why everyone bangs on about his work!  So I’m a philistine and I don’t care!  There, I’ve said it.

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So I felt a little duped into being at the Aldwych Theatre tonight for a performance of Bring Up the Bodies by Hilary Mantel.  A drama based on the life of Thomas Cromwell during the time of Henry VIII.  Oh joy I thought to myself when I realised what we were seeing!

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Handmade Fair

images-2I love making and creating things.  I may not be brilliant at it but I love it.  There’s something wonderful about taking something everyday and making it into something beautiful.  Or making something that’s colourful and creative to hang on a wall, in the garden or wear.  Gifts are so much more special when someone has made it for you, with you in mind.

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