Ruby Wax – Sane New World – A manual to how to survive the 21st century

Wow Wow Wow.  Just got in from seeing Ruby Wax’s new show ‘Sane New World’.  It’s well documented that Ruby has been diagnosed with clinical depression and, like so many things in her life, tackled it head on, talked loudly about it, studied it and now has the tools to see the signs of it’s return and in turn manage it.

….keep reading….

However the most important aspect (as I see it) is that she talks about it.  She brings ‘depression’ into the public domain.  There’s no stigma to it.  It’s just life… and for 1 in 4 of us it’s often everyday life.  Like Stephen Fry, she is able to articulate something that many people shy away from and indeed deliver it in a way that you can even laugh!  (SHOCK HORROR).

The show though isn’t downhearted or depressing.  It’s not a ‘woe is me’ tale nor is the audience full to the brim with ‘tie-dye’ or the bar/restaurant devoid of sharp objects for fear of anything happening.  Actually it’s well rounded and for everyone.  I can’t think of anyone that wouldn’t benefit from seeing the show, listening to it and being open to understanding it.  After all 1 in 4 people have depression in their lifetime and if we were all better able to spot the signs, address it, talk about it and take action, I’m quite sure the world would be a much better place… and a little saner!

It’s certainly spurred me on to revisit my NLP training, dig out my notes from my Certification and Masters.  I think that although I know I still practice some of the techniques myself, it would be an incredibly valuable tool to reinstate in my life, work, advocacy and general practice.

Go see the show…  On until 14 March at St James’ Theatre, London Tickets

Telegraph review of show
Ruby Wax – book

Update on my rant

How cathartic was my rant yesterday for me?  Huge.  Thanks for listening.

Clearly it also had an impact and things have moved on in just one day.  Was it because of…. My rant?  My tears?  My persistence?  Or actually good Drs but bad gatekeepers?

Very early this morning I received a call from the receptionist at my GP surgery.  Another Dr in the practice whom I’ve not seen for several years wondered if I’d got time to call in to see her.  The receptionist knew nothing more and said if it was difficult to come in to an appointment, then the GP wanted to speak to me on the phone later on today.  Of course I’d make time for a face-to-face appointment.  My appointment was booked for late morning.

During the next few hours my mind was busy wondering why I’d been summoned?  Was I to be told off for making a pain in the ar*e of myself chasing up appointments?  Did they have the blood test results and wanted to share them?  Were they able to refer me back to the dermatology specialists urgently.  Was it good news or not?

I turned up 20 minutes early for my appointment and was quickly shown down to the consulting room.

It was good news.  Very very early this morning my GP had received a call from the specialist I’d seen in January.  She was very apologetic that I’d been left out of the loop – although still insistent that I didn’t have a follow up appointment booked and nothing available until the end of March.  She was concerned that the disease had advanced and suggested I should be fast-tracked into the hospital system of urgent referrals for dermatology specialists.  However apparently she is also aware that this isn’t going to be immediate!  So my poor GP spent a while on the phone learning about the disease.  A page with handwritten notes (lots of them) and some very complicated instructions about what they’d do for me right now to control the spread of the disease and hopefully reverse the effects so far… but it’s not going to be an easy 10 days ahead.

I had further examinations, swabs taken but no biopsies at this point.

I was asked if I was prepared to be part of an unauthorised trial.  That sounds a lot worse than it is but essentially the specialist (and her colleagues) had struck upon a combination of drugs that seemed to work when administered in this way for the oral disease… however it’s unproven and might be questioned.  Absolutely I’m happy to participate – medicine can only move forward with trials.  After all penicillin and many other things we use today were discovered by mistake or chance.

My GP told me that we’re going to hit it hard by throwing everything we’ve got at it for a short period of time.  We’re going to nuke the disease!  She’s going to find out the blood test results and has also put in an urgent referral to the hospital dermatology specialists.

20 minutes later I left and headed off to the pharmacy to collect a bulging carrier bag of medicine (and I’ve still got to go back tomorrow morning as they’ve not got 3 of the prescriptions I need in stock!).

The pharmacist did query with me the ‘trial’ drugs.  They were concerned that they’d been mis-prescribed but when I explained it, they were happy to help.

So over the next 10 days I’m going to be ‘nuking’ my body with a vast array of medicines in tablet, cream, ointment and liquid format.  There are a number of potential side affects of the drugs I’m not looking forward to but hell it’ll be worth it if it works… and the potential side effects may not be a problem for me.

What did I learn today?

  • Too not give in and to pursue appointments
  • To mention ALL symptoms as they may actually be related to one illness
  • It’s worth having an annual NHS Prescription Prepayment Card (PPC) http://www.nhsbsa.nhs.uk/1127.aspx  After only today’s pharmacy visit and the many prescriptions required, I’ve already saved!
  • To thank people in healthcare.  Often situations like yesterday aren’t their fault but perhaps due to misunderstanding
  • You can’t have an ‘urgent’ referral to a GP dermatology specialist – it has to be in a hospital setting.

So here goes… wish me luck!

Verdi’s Requiem and Stravinsky’s Requiem Canticles

Tonight I snuck off to the Royal Festival Hall for a concert.  I always feel a little naughty sneaking off to concerts on my own but delightfully happy to do so.  I particularly love the Royal Festival Hall as the acoustics are fabulous, the interior decor amazingly retro and tickets are affordable.

The incredible London Philharmonic Orchestra were performing the Requiem with a twist and I wasn’t going to miss it.

LPO RequiemSuch a clever performance and not as standard as most music lovers would know.  The conductor, Jurowski, bought together the London Philharmonic Orchestra, London Philharmonic Choir and Pamplona Choral Society to produce a spellbinding concert.  The evening’s performance was with both Verdi’s Requiem and Stravinsky’s Requiem Canticles.  A contrast in style, precision and drama.  Where Verdi had written his Requiem from grief, Stravinsky had written his with an expression of calm detachment.

A powerful performance suited the Royal Festival Hall perfectly.

Exceptional.  What a treat.

Reviews:

‘Jurowski drew from the musicians’ precise synchronisation for the Stravinsky, and realised Verdi’s quasi-operatic drama without ever indulging in mere theatricality.’
George Hall, The Guardian, 27 January 2015

‘… outstanding choral singing and orchestral playing [with] the splendid Orfeón Pamplonés [and] powerful singing of the London Philharmonic Choir. And rhythmic definition was razor-sharp, impetus highly charged, under Jurowski’s baton. […] Each tiny ritualistic section [of Stravinsky’s Requiem Canticles] was minutely sculpted by Jurowski into pungent fragments of sound and eloquent silence.’
Hilary Finch The Times 26 January 2015

‘Rather than let the [Verdi Requiem’s] Sanctus bound off like a race-horse, Jurowski settled on a slightly more relaxed speed that gave it substance and meaning, and the same approach to the big Libera me fugue paid off handsomely in terms of weight and clarity. This was very much an opera-conductor’s interpretation. […]
Peter Reed, Classical Source, 25 January 2015

The Unremarkable Death of Marilyn Monroe

Tonight’s outing was to St James Theatre Studio in Victoria to see a monologue play about Marilyn Monroe’s final hours.  The play was written as if we were in Marilyn’s bedroom and she was talking to us.  Incredible part and I take my hat off to the actress, Lizzie Wort, who ‘became’ Marilyn for the entire 1.5hrs.  The set was cleverly put together from police and press photographs and then sourcing the (now) retro items and specific books and prints to make sure it was true to the story.  Even the labels on the many pill bottles were correct to the many prescription drugs that Marilyn had at the time and even the prescribing Dr’s details written on them.

Screen Shot 2015-02-01 at 17.34.21

When I was in my early 20s I was a little obsessed by Frank Sinatra, Marilyn Monroe, Sammy Davis Jnr, Jackie O etc etc and read every biography and autobiography that I could get hold of.  The intrigue, deceit and glamour of the age kept me reading and cross-referencing the stories.  Rarely did the next corroborate the last.  Clearly there was much more to what happened, when and by whom.  Or was it simply that there was so much going on at the time that memories, dates, times and persons present were often ‘forgotten’.  So attending this play was fascinating.  It turns out the playwright had also started in a similar way reading, cross-referencing and asking questions.

The play was his interpretation of what may have happened in the last few hours of Marilyn’s life.  It explained a lot but it also raised more questions.  Cleverly delivered and an amazing performance by Lizzy Wort.

For me, I loved it.  Perhaps only for those who have been captivated or truly intrigued by Marilyn Monroe.

Following the performance there was a Q&A with the playwright, Elton Townend Jones and Lizzie Wort.  Fascinating to stay for this part and hear why he wrote the play and where he got the information upon which he based the script.  We also discovered where the props were sourced, why the clock was set at that time and why there’s a the bad picture of a bust of Abraham Lincoln.

The play originally staged at Edinburgh Fringe Festival in 2013 and has been on tour since then.

Some reviews:
★★★★★  ‘Superlative’ RemoteGoat
★★★★★  ‘Simply stunning’ Edinburgh Reporter
★★★★★  ’Spellbinding’ The Carrick
★★★★★ ‘Outstanding’ One4Review
★★★★  ‘Anything but unremarkable’ Three Weeks
★★★★ ‘Fantastic’ Broadway Baby

Rip Off Britain

Did you watch it?  I did warn you I’d be on your tellybox.

Rip Off Britain: Holidays, Episode 4 featuring lots of lovely people and me.

The piece I was asked to be involved in was with reference to the high cost of travel insurance for people with long term conditions.  It’s not just the high price though.  What we wanted to do with this story was highlight that often people don’t know their current travel insurance no longer covers them, or that their premiums will now be absurdly and often inequitably high, even if they’re many years post-diagnosis (as I am).

We also wanted to demonstrate that there are companies who will treat you as an individual, assess your case and provide a quote personal to your circumstance, holiday destination and health. I am so pleased Fiona Macrae of InsuranceWith was also featured on the same programme.  I was fortunate to meet Fiona at a time when I finally thought I’d best not travel anymore without insurance and discovered their personal approach and in turn an affordable cover.

I also hope that this feature may provoke discussions between individuals and their insurance companies to get some of the bigger companies who don’t ‘personalise’ insurance to become better at making the assessments of if they’re unable to offer ‘realistic’ travel insurance then simply not to offer it at all and to direct people to other companies who do offer it.

I’m personally pleased that the BBC also kept in mention of Phyllodes, not only verbally but also as I typed it into my computer.  Odd perhaps to be pleased with this but I was once told I was unique in my diagnosis and felt alone.  Since then I have met hundreds of others around the world (online and in person) who’ve also been diagnosed with Phyllodes and also felt alone.  I can guarantee someone looking at Rip Off Britain today doesn’t feel quite as alone as they did yesterday.

Anyway, I shall leave you to decide if I did the story justice.

‘Visitors’ at Bush Theatre

I’ll be honest, I’d never heard of either the play ‘Visitors’ nor the Bush Theatre until today.  Both were incredible and I can heartily recommend the play and the theatre.

First a little about the Bush Theatre.  It’s a very short walk along Uxbridge Road from Shepherds Bush.  Honestly it’s a fairly uninspiring building from the outside and looks like so many other public buildings in London.  The inside however tells a completely different story.

bush_library_-_front

In 2008 a shiny new library was opened in the nearby Westfield Centre leaving the future of this building in doubt.  I suspect originally the Local Authority may have seen a value in this building and relocating the library freed up this big site for possible redevelopment.  What the Local Authority perhaps hadn’t considered before the relocation of the library was the wishes of the philanthopist, John Passmore Edwards who had ‘gifted’ the building to the Council.  Mr Edwards had, so the rumour goes, included a clause that said the building was to be used as a library for the public and if this use ceases then the ownership of the building is to be given to his old school.  Ha, now what?

So as not to lose the building, the Council cleverly looked at reuse with the inclusion of a library.  The newly redesigned inside now offers something for everyone and complies with Mr Edward’s restrictions.  There’s a lending library with an assortment of novels, fiction, history and other books in a side room from the bar, separated by the original partitioned wood and glass doors and walls.  There are also large bookshelves in the library area displaying, for sale, manuscripts of plays performed in the Theatre.  Mr Edwards’ wishes are still being fulfilled in the newly designed and re-purposed space.

In addition to the library/reading room, which is furnished simply with mismatched chairs, tables and sofas, is a cafe/bar.  A chic yet comfortable space.

We were pleasantly surprised to see a vast range of food and drink offerings at affordable prices.  The alcoholic selections of beers and wines appear to be at normal bar prices.   However the coffee/tea, soup, sandwiches and cakes are at non-London prices and wonderfully so.  If I was a local, it would definitely become somewhere I could pop in for coffee, cake and a read regularly.  Clearly even on a theatre day, there were locals enjoying the space and relative peace and quiet of the reading room.  I’m revisiting in a few weeks with my Godmother for lunch.  Very much looking forward to seeing what it’s like.

Behind the bar and down a few steps is the theatre.  It’s ‘in the round’ and the seating is unallocated and on long wooden cushioned benches.  Some people have commented about being uncomfortable for the whole performance.  Not me, I have my own ‘padding’.

A superb theatre venue and looking at their programme of upcoming and previous plays, they clearly like to promote new plays and upcoming writers.  Definitely worth a visit, you might just see a new theatrical gem.

Visitors

Now to the play we saw, VisitorsNot my choice and initially, I’ll be honest, I wasn’t sure about it.  My main concern was that the story was tackling a huge subject that sadly affects so many families around the world, dementia.  It’s a subject that sometimes is trivialised or that ‘sufferers’ are treated unfairly or misunderstood.   So very difficult to get it ‘right’.

The play is about a farming family where the mother is clearly becoming more and more forgetful.  Her husband, beyond retirement age, still runs the farm himself.  Tending the land and animals whilst looking out for his wife who clearly he adores.  Their son, married and with his own children, has left home and now works in the City.  Clearly his choice to pursue a career other than farming didn’t sit right with his father and you can feel the tension between father and son.

The final cast member is a young lady who had applied for a live-in companion role on the farm to keep an eye out for the mother.

The play is wholly about the dynamics between each of the parties.  It’s every day as the mother’s health deteriorates and relationships become strained.  The length that the father goes to to show her love and not to let her go into a home.  The practical son who wants them to sell the farm, Mum to go into care and Dad not to have to worry about everything.  Totally heartbreaking.  The part of the carer-companion is delightful.  Her smile and enthusiasm to show love and care to everyone.  Her choosing to sing with the mother songs and see that she knew every word to but couldn’t remember how to ask for a cup of tea.

The play is beautifully crafted.  It is incredibly sad and thought provoking but also peppered with comedic parts that left you laughing at the most poignant of moments. It tells the real story of dementia and Alzheimer’s.  It’s incredibly touching and I don’t mind telling you that my eyes may have leaked once.  What was totally incredible about the script and it’s delivery was that I came away ‘understanding’ the position of every person in the story.  I didn’t feel sorry for any of them but could totally empathise with the decisions that had to be made or the upset at not being understood.

Incredible production and I really hope it makes it in to other theatres or even televised.  It would help so many people in this situation or for whom it’s ahead of them.

Following the production the charity Dementia Friends run a short workshop in the library for anyone wishing to learn more.

Amazing.

Alzheimers Society
Dementia Friends

Reviews:
Independent – It’s a play made with love.
The Guardian – Infinitely touching.Telegraph – It is an absolute beauty, by turns funny, tender and desperately sad.

Button obsession

Firstly I should say a huge thank you to my friend, Miranda, for passing on her obsession with buttons and crafting to me!  We spent a Saturday afternoon in late November making Christmas cards with buttons.  Finding designs on Pinterest and the internet that we could copy or give us inspiration to change and then create ourselves.  A very patient Pete (Miranda’s hubby) watched the sport on TV whilst trying to block out our nattering and excitement as we successfully created a new card design.

Since then I’ve been sewing and sticking to my hearts content.  A wonderful way to spend time in front of the TV creating and writing each and every card.

I think everyone is in shock that they’ve got a card, let alone that they’ve been handmade and posted on 1 December.

IMG_7437 Xmas cards

I should ask everyone to put the cards away with their Christmas decorations in January and get it out again next year and the year after… this may be the only Christmas card they ever receive from me!

I even did a special one for the tennis club with a net sewn with green embroidery thread.

Tennis card

Oooh I’ve also made a Christmas wreath.  I’ve loved using old buttons that were my Mums and Granny’s.  I had a big old cotton bag full of buttons that have been gathered over years.  I’ve especially loved that some of the buttons I remember on Mums jackets and Granny’s coats.  I love that they’ve been incorporated into my Christmas wreath.

Xmas wreathSo right now I’m feeling a little lost… what do I create with buttons now?  I need a new project… I’ve got a few ideas but I also need more buttons.  Have you got a selection of odd buttons loitering in a drawer that you don’t know what to do with?  Send them to me please… 🙂

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!

IMG_7210

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.