Itching to tell you about it…

and also need an ickle rant.  Re my autoimmune stupid f’ing thing..

Firstly it’s got worse.  I only had external rashes (OK really unbearably itchy and all over my body but…)  when I saw the specialist in January after a 2.5month wait for an appointment.  The external spots have improved but joy I now have internally.  At my January appt my specialist informed me she was relieved there was no evidence internally.  The external rash can be managed by steroid creams but internally the treatment plan of oral steroids has pretty horrid side affects and was to be avoided at all costs.

I also had blood tests in January.

Whilst with my specialist she confirmed my appt for 4pm on Tuesday 24th February.  Approximately 3 weeks ago, I noticed signs that it may have spread internally but figured if it didn’t get any worse I could hang on for the appointment already in the diary.  However a couple of weeks ago the pain and ‘affects’ of the internal disease got too much.  I visited the specialist office in the hope of seeing her briefly to be able to get my suspicions confirmed and diagnosed, manage it or at least book an urgent appt.  I was sent away by the receptionists as I wasn’t a patient there!

Next stop my GP.  I had to make an appointment… and wait for the appointment… but relatively quickly got one on 6 February and she put in an urgent referral to be seen by the specialist with the new symptoms.

16 February I chased this up.. the pain now getting unbearable at times and also having a permanent ‘scratch’ in my throat whatever I eat.  Call me old-fashioned but I’d like to get that all sorted!

Apparently my ‘referral’ wasn’t urgent.  But I got the secret code and phoned the specialist to make an appointment.  The first one being at the end of March.  I said there was little point and disappointed as I was, at least I was seeing her next week.  They then told me that there was no appointment for me next week either!

The specialist office receptionist called me back later having checked with the specialist who said she didn’t need to see me again.  Hmmm so I guess that’ll be no follow up, or blood test results then?

I called my GP to get an urgent appointment there.  I was told there aren’t any appointment for a week or so.

I called the specialist surgery back again, in tears by this time, to be told there was absolutely no way they could get me an appointment and that I should go to A&E!   (And they wonder why A&E is busy!!!!)

I called my GP back again… they manage to find me the last appointment of surgery times yesterday evening.  She was horrified.  She inspects my mouth and throat and also does an internal examination and confirms there are lesions in both areas.  She looks at her notes and sees a letter from the specialist to me following my January appointment that says she’s got an appointment with me in a month’s time to follow up.  I neither received that letter nor (I now know) have that follow up appointment.   She faxed this, with a covering note saying it is urgent, to the specialist surgery last night whilst I was there, asking that they ‘fit me in for an urgent appointment’.

This afternoon I call the specialist surgery to discover the fax is still on their fax machine, that nothing has been done, that they have no appointments until the end of March and, after quite some time on the phone, they would now discuss it with the Dr tomorrow to see if she can make time for me soon.  No urgency.  No apology.  And no reference to the letter from the specialist confirming that she had an appointment in the diary to see me!

Allegedly I’ll hear from them tomorrow.

Apart from being in pain and really not loving the side effects of the spread of this disease, I’m so very disappointed with this specialist surgery’s approach to healthcare.  It’s no wonder that people are unhappy with their NHS when things like this happen.  I’m fortunate in that the NHS have been excellent to date… but it’s individual cases like this that leave a bad taste, get reported in the press and then make people care less about keeping our very valuable free National Health Service available to all.

I know that what I’ve read on the British Association of Dermatologists website that if left untreated it can become erosive internally.  Call me old fashioned but I think this may be an extreme weight-loss program!!  And also once ‘erosive’ it may develop into cancer… been there already and not sure I really want to do that one again particularly when it may be avoided if managed by drugs and care from a specialist early on!

Rant over… but thanks for listening!

My Health Update

Well there’s good news and bad news…

The good news is that I had my 6 monthly ultrasound and chest x-ray and no sign of any lumps of mets from Phyllodes.  That’s the good news.

I also met my new consultant at the Royal Marsden.  Lovely chap who’s just returned from working in the US.  He understood the frustrations with a rare cancer diagnosis and I was delighted that he’d taken the time to read my notes and know about ME.

He kindly spent time with me chatting about how I’d been and asking if there was anything I was concerned about.  I told him that my boobs were still very painful (they always have been, but so much worse since Phyllodes, however probably nothing to be overly concerned about as I have such a good follow-up regimen).

I also showed him a rash I have had – I only showed him the rash on my wrists.  (The poor radiographer who had done my ultrasound a few weeks earlier had been utterly surprised by the rash on my boobs and armpits.  She looked genuinely shocked and horrified that I’d been waiting for several months to get a dermatology appointment…. more about that in the ‘bad news’ section.)  My consultant didn’t know what it could be but thought it may be auto-immune.  This then led me to ask him what he knew or suspected about a connection between Phyllodes and auto-immune illnesses.  His response **raised eyebrows** “that’s very interesting, why?”.  I told him that within our Facebook Phyllodes Support Group we had, and are still running, a poll asking members if they (or family members) had been ever been diagnosed with an auto-immune disease.  Although only 150odd people have responded there’s a big percentage that have a link.  Auto-immune disease is a spectrum of disease though and covers psoriasis to multiple sclerosis.

A good explanation of auto-immune disease is:

Autoimmune diseases are a large group of conditions. They include

Rheumatoid arthritis
Multiple sclerosis
Inflammatory bowel diseases
Skin conditions, such as psoriasis

If you have an autoimmune disease, your own immune system attacks your body tissues. Normally, our immune system protects our body against infections caused by bacteria, viruses and other parasites. It recognises when something foreign enters your body and can usually get rid of it before it causes you any harm. But if you have an autoimmune disease, your immune system can make mistakes. Your immune cells start to attack your own normal body cells.

I left the Royal Marsden feeling assured about my Phyllodes health but also that they are assisting me and others diagnosed with Phyllodes in researching and answering questions for our Phyllodes Support Group.  My consultant has subsequently emailed me to let me know he has chased the researcher who has a list of ‘basic’ Phyllodes questions to answer that I sent in a while ago.  The answers to these questions will allay many fears for newly diagnosed Phyllodes patients.  As it is so rare and there is little/no clinical research to rely on, I have suggested that they caveat any answers of concern with ‘in the experience of Royal Marsden’ or ‘to the best of our knowledge’ etc.  It would be good to have some answers on behalf of the UK sarcoma medical profession.  It is then aimed that the same questions will be put to medical professionals in the US, Australia and Asia.  All four sets of responses will then become available to new members of the Phyllodes Support Group.

My consultant also advised in his email that he’s asked the research team to look at any links between Phyllodes and auto-immune diseases.

The bad news…

…back to the rash.

At the end of October the soles of my feet started to really itch.  Initially there was nothing visible but soon there were small spots and dry patches.  I did wonder if I had fleas or bugs in the carpet.  I wish!  Next a sore angry rash appeared on my wrists, the palm of my left hand and both ankles.  I spent an age hoovering and rehoovering carpets, cleaning, dusting and generally convinced that it must be bugs.  Convinced that the spread to my hands and wrists must be because I’m scratching my feet.  I have been, as I’ve previously on my blog, very tired or fatigued for months/years but it had been getting worse. I know most of you see my facebook posts about my playing of tennis and going out… but you don’t get to see the posts that say I’m having an afternoon nap and didn’t wake up until midday and back in bed early or staying in most evenings.

Back to the rash.  By early November I could cope no more.  It sounded ridiculous but I was on the brink of tears trying to get a GP appointment asap for a ‘rash’.  I wasn’t sleeping well as the itching was so much worse at night.  My visual migraines returned and headaches for fun too.

My GP looked at the rash, said she didn’t know what it was and referred me to a dermatologist.  A few days later she called to say that the referral had been rejected and I needed to try a rash cream.  After a week of slathering myself in the cream, the rash had just spread and was as red and raw, if not more, than before the cream.  I booked another GP appointment.  This time she referred me again with a stronger note and saying the rash had now spread to my chest, armpits, groin, crook of my elbows and crook of my knee as well as my bellybutton… so basically anywhere that gets hot!

A few photos taken at the beginning of December:

LP - December

I waited… and waited… and chased up my appointment… and waited… and was told that my referral hadn’t worked in the system… had to chase my GP to do it again… and waited… and waited… and then called my GP again (in tears)… and waited… chased the referral service… who referred me back to my GP… who referred me back to the service… I cried… who then took pity on me and gave me a reference number, my secret NHS booking password and the number of the dermatology practice… I called them and was told the earliest appointment was over two months away… I booked it… put down the phone and cried again.

I know it was ‘just a rash’ but it F’ing hurt and believe it or not I was worried about the rate at which it was spreading.

I missed an ex-colleague’s funeral. Although the GP had said it wasn’t contagious, she didn’t know what it was and I couldn’t risk attending a funeral where other cancer patients may have compromised immune systems.   I’m sure Ally would have understood.

I was wanting friends, who’s daughter had been hit by a car in October and were ‘camping’ out in my local hospital at her bedside, to spend an evening with me so I could cook a homemade meal for them.  Again I was too scared that should this be contagious I’d make their situation worse just because I’d like to cook for them.  In the end I prepared a Friday night Indian takeaway meal of curry, dahl, naan, pilau rice, bhaji, poppadom, wine and beer.  The food prepped and cooked with me in latex gloves.  I also made some homemade soup for them for another night.  I did seem silly asking them to call round on the way home from the hospital to collect it without inviting them to stay.  I didn’t want to take the risk.  I’d never forgive my selfishness.

Apologies to anyone else I’ve not seen, rain-checked or not taken up some fun outing but I hope now you’ll understand why.

Just before Christmas I again called the GP and this time insisted on seeing my old GP at the practice, who’s been my GP since the 1980s.  He understood why I was so upset.  Looked at the spreading rash, he also said he didn’t believe it was contagious but didn’t know what it was.  He then wrote out a prescription that meant I had a drug that not only managed nighttime itching (generally eczema) but also had a sedative in it.  However he didn’t think it would cure the rash.  What a treat on 23rd December to have sleep!

Finally, 10 days ago, my appointment with a very kind dermatology specialist arrived.  I should have taken photos at this stage – definitely the worst time.  Diagnosis took just a few minutes.  Her opening line was “oooh I think I know what it is.  It’s very rare and you seem to have a severe case”.  (Oh joy another rare thing for me then!).  After consulting the computer and getting a second opinion from a colleague she told me that I’ve got an auto-immune disease, Lichen Planus.  So far my Lichen Planus (LP) is only external.

She did think that the LP may be caused by something else wrong in my body which has caused the LP to flare.  Blood tests ASAP.  Possible damaged liver or hepatitis.

I left with a prescription for some uber moisturiser and a really strong steroid cream.  She was concerned about giving me oral steroids as apparently what would be required for LP is super strong, has side affects and may be something that I have to continue to take.  So creams first.

I felt relieved to know what it was and had full confirmation that it’s not contagious.  But scared as to what it may be disguising.

As the itching was still horrendous (but being treated) my original GP also kindly did a new prescription for the sedative pills so I can sleep.

So it’s been a crazy time.  Lots of time slathering moisturiser and steroid creams on my body.  For the most part the rash is less angry, the blisters are rarer and for the most part I’m just scarred.   The worst areas are where it started and first spread ie the feet and wrists.  Some photos from earlier today:

Lichen PlanusI’m worried about some new itches and spots on my scalp and mouth ulcers and spots.  From what I’ve read these areas can only be treated orally and if it spreads on the scalp may lead to permanent alopecia.

I’ve got my next dermatology appointment at the end of this month.  Hopefully the creams will have sorted the external spots and the other itching is only in my mind!  I’ll then get the results of my blood tests too.

I’m also feeling much better than I did when first I heard the name Lichen Planus, as I’ve found a fabulous support group on Facebook.  It’s been reassuring to ‘chat’ with others who’ve been diagnosed.  For the most part they talk about it taking months/years to clear and then returning some years later.  I’ve also read about it being incurable but manageable.  It was also been reassuring to hear that there are others who have loss of balance, visual migraines and fatigue – seems this may be something to do with what I’ve been experiencing.

I have been truly fed up though.  I’m fed up of being ‘rare’.  I’m fed up of having stupid and many symptoms.  I’m fed up of worrying about going to see my GP.  I’m fed up with trying to pick my ‘worst’ symptoms to tell the GP about rather than bother them with them all in the limited appointment time.  Nothing seems to be specific or fit into the box.  I hate being a GP botherer however I’m wondering if maybe I should have been earlier ie before LP showed up as a rash.

Anyway enough for now… thought you should know.

BTW I did email my Phyllodes consultant to tell him I’ve been diagnosed with an auto-immune disease.  He’ll be adding LP to his research.

So there you go… the good, the bad and the ugly (well that’s evident from my photos!)

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

And also… it was results day!

This afternoon I met with my new consultant at the Royal Marsden to receive the results of my 6 monthly scans.

ALL CLEAR!  Bring it on… another 6 months under my belt.

I had a lovely chat with my new consultant.  What a wonderful Dr.  We were able to discuss a whole host of things that have been raised via the Phyllodes Support Group.  He’s assisting with putting some ‘advice sheets’ together for the Group and also investigating some links to other research I flagged today.  Interesting also as he has been working in the US for many years and understands the differences between the US and UK for Phyllodes.  Very useful insights.

He shook my hand and congratulated me when I told him I managed to get Phyllodes mentioned on TV today!

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.

My very special Christmas Tree

I don’t usually bother with a Christmas tree in my little London flat.  Most years I’m heading out to family, too busy or ignoring Christmas entirely.  This year though I’ve really entered into the spirit.

Christmas cards have been made by hand, written and sent.

Christmas presents bought and wrapped.  With those that needed to be mailed have been sent and received by the recipients ready for Christmas.

A Christmas tree has been made too and decorated with some very special ornaments.  I chose some canes wrapped in willow for the ‘tree’.  I’ve then wrapped silver wire around the canes to represent the branches.  From the silver ‘branches’ I’ve hung decorations that are very special:

  • Some were Mums and had hung on her Christmas trees over the years.
  • Some were made by Mum from old Christmas cards.
  • Some have been received from around the world from my Phyllodes ‘Sisters’.  Each year our Phyllodes Support Group host a Christmas Ornament exchange between members.  Names are selected at random and distributed.  Decorations are bought and sent by mail around the world.  Over the years I’ve received some truly special ones from some amazing people who’ve also been diagnosed with this rare sarcoma cancer.  Some ornaments were sent to me from ‘Sisters’ who are no longer with us.

IMG_7560

It may not be straight or have perfect symmetry in the decorations but it’s super special to me.  Suffice it to say that I love my very special Christmas Tree.

 

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… 🙂

Genetic Testing

In August 2011 one of my co-administrators in the Phyllodes Support Group posted in the group a request for 1,000 people who had been diagnosed with sarcoma to be part of a sarcoma research project on 23andMe.  The project was sponsored by 5 charities, Beat Sarcoma, Sarcoma UK, Association of Cancer Online Resources, Sarcoma Foundation of America and Sarcoma Alliance.  The aim was to genetically test 1,000 people who’d already been diagnosed with a sarcoma and see if this testing would find a link between us all.

A spit sample with the aim of producing a valuable research outcome that may help thousands of others in the future.  Of course, I registered immediately.

As part of the testing process each participant received their genetic test results free of charge.  I’d never considered having genetic testing so for me the test results were an added bonus.

Between my spit sample being collected by a DHL courier (who looked horrified when I had to declare the content of the package being sent to the US), and my receiving the results I found myself wondering what I would find out, whether I should even read the results, what I would do IF it told me something I’d not like to know.

At the time in the UK the process for genetic testing was to be referred by your Dr and to have counselling as part of the test.  The counselling is carried out before, during and after your test results to ensure you’re able to cope with the results and what you would do should they not be what you expected.

However as I was participating in a project run via the US, counselling was not offered and I’d not thought it would be of concern when I signed up.

Me being me, decided that I should do my own ‘counselling’ and, as far as I’m able, ensure that I’m in the best mental state to manage any results – good or bad.  I made myself consider what it would be like if I opened the email to discover that I was high risk of an illness, what I would do, who I should tell etc.  I made myself not only consider it but imagine that was the result.  I needed to know how I’d cope and what I would do in those circumstances.

So when I received an email “Your 23andMe Results are Ready!‏”, I felt prepared.  Although I confess to not opening the email for an hour or so whilst I paced and reconsidered what I’d do.

I was fascinated when I opened up the results.  How could a little bit of spit identify that I had blonde straighter hair on average, blue eyes and if a smoker, likely to smoke more!  All correct although I’ve now not smoked for years.

Within Disease risk, I discovered that I’m slightly higher at risk of coronary heart disease, ulcerative colitis, breast cancer, celiac, Crohn’s and Lupus.  But these are all relative.  On most of them I’m only very slightly higher and still it’s only 0.5% chance where the average population is 0.2%.   I can see however that one might read that as over twice the risk of the average population rather than 99.5% risk of NOT having the disease.

With all statistics and numbers it’s difficult to interpret them without emotion and to understand percentage risks in a way that’s meaningful.

I was however angry when I read my results for multiple sclerosis.  Mum had MS and my Aunt was diagnosed after Mum in the early 90s.  I remember Mum telling me that as MS is something that generally passes down the female line, according to her Dr I had now a 50:50 risk of being diagnosed with MS.  I’ll admit that this has weighed heavily on my mind since then and has infuenced decisions I’ve made in my life.  One of my school friends, Belinda, was diagnosed in her 20s with MS and passed away a few years after diagnosis.  And I’ve watched Mum become less able and eventually pass away from MS.  So when the results of my 23andMe genetic testing indicated that my risk of being diagnosed with MS was less than the average population, I was livid.  I was furious that I’d spent 25 years worrying about it.  Every time I had numbness or tingling in my fingers and toes, when my eyesight was playing up and many other ‘symptoms’, I’d wondered if it was the start of MS.  Ironically over the years I’ve never thought that they could have been wrong… 25 years ago they knew far less than they now know!

So what else did my results show me?  Actually I’m quite healthy!  For the most part I’ve a typical result or one that isn’t far off the average population.  I also know I have an increased sensitivity to Warfarin… so should I ever be prescribed this, I will know to tell the Dr that I need a decreased dose!  Nothing of note within my Carrier Status.  Only disease risks that are more than double the average population are melanoma (3.6%), celiac (0.7%) and lupus (0.5%)… but they’re still only very small percentages so I’m not going to worrry about them.

Since my first registration I’ve received regular updates from 23andMe when new research comes to light and my results are re-assessed.  I’ve been fascinated to read them.

Within 23andMe you are able to link your results to others and many of us from our Phyllodes Support Group who took part in the trial have done this.  We thought it may be interesting to see if there were traits/risks that we could identify between our small cohort group.  Sadly we couldn’t see anything that stood out with the exception that many of us had higher than average auto-immune disease risks.

So why this post now?

23andMe have just launched in the UK.  This means that anyone is able, for a price, to obtain their own genetic testing via 23andMe and without genetic counselling.  It’s a service accessible via the internet.

Germany are considering 23andMe being available there.  This week I was asked my views on it and asked to record a piece for their TV channel ZDF.  You can see it here from about 4.10.

Inevitably there’s been lots of discussion about whether it’s a good thing.  Whether genetic testing should be allowed without counselling?  Whether the results provided by 23andMe are accurate enough and using up to date data?  My view, is ‘Yes’ but with caution.  Anyone undertaking genetic testing needs to consider why they’re doing it.  What they want to know/understand from the test results.  How they’d deal with the results being good or bad.  Who they’d tell.

I wouldn’t have had my genetic testing carried out were it not for the Sarcoma Community Project.  However I’m pleased I did.  I feel I know more about myself, my health and my risks than before.