6 monthly scan results

A couple of weeks ago I visited the Royal Marsden for my Summer 6 month scans – chest x-ray, ultrasound and boob squish.  Stupidly (and I should know better) I neglected to take some ibuprofen before my boob squish.  I was once again in extreme pain and so super envious of ladies who don’t have pain.  (How do some ladies go jogging without a secure bra?)  I suspected the mammographer had spotted something as she insisted on doing a couple of extra scans to ‘get in the sides’.

Next up was my ultrasound.  Whilst I was changing into my ‘everso sexy’ dressing gown, I heard the radiographer being called in to see my mammogram results.  Long story short she said she could see a small dot but suspected it is a cyst.

Today was my appointment with my consultant.  He has vast experience with phyllodes tumours as well as a wonderful disposition and honest, caring approach to me, the patient.  I’m so very grateful for such a fabulous consultant.

We talked about ‘the dot’.  We’re not sure it’s a cyst.  I’ve had no other cysts before now.  BUT rather than poke around and upset my breast tissue, we decided to leave it ‘just so’.  My consultant has asked that in six months we have a full set of scans and tests again (usually I have a mammogram once a year in the Summer).  He did, however say that if I had any concerns or worries at all, I was to contact him directly and an appointment would be found.  I’m happy with this.  I appreciate his experience and the open discussion.  I feel assured I’m in the best hands and care.

He also made sure we spoke about my auto-immune disease.  The drugs I had taken and the side affects I’m still left with (as well as the residual disease).

We spoke about my friend who’s currently undergoing surgeries following the discovery of new phyllodes tumours in her heart, liver and lung.  He wants me to forward details of the hospital and surgeon so he can learn more about the case and educate himself and his team.

We also spoke about a clinical trial that I’m trying to get set up in the UK for Phyllodes.  I’ll write more about it soon… hopefully with good news.  Once again, he wants me to keep him in the picture so that he can ensure he/the Royal Marsden are able to recruit for the trial.  Such positive news, we hope.

Finally we spoke about life.  His and mine.  He asked me how I was doing.  Was there anything else I was worried about.  Any other aches, pains or points of concern.

I feel totally looked after… and hopefully the dot will remain just that, a dot.

Glass Memories of Washington

When I visited Washington at Easter, we (Andi, Sam and I) chose an object that I could use to create something in glass.  The object we chose was a pine cone.  You’d think that’d be simple to use.  Perhaps to create the object in glass?   Perhaps use the texture from the cone?  Or something else?  When I showed the tutor she dismissed creating it in glass as the cone was open and difficult to cast.  She suggested I use the base to create a latex mold and then add these ‘flowers’ to a piece.

Over several weeks, I’ve been making the wax ‘flowers’.  I decided that I’d like to do a bowl with the flowers around it.

The process is the same, create the was ‘flowers’, create a wax bowl, affix the ‘flowers’ securely and try to close up the gaps to reduce risk with plaster.  It takes an age to get the completed wax model.

Then I mixed up the plaster and flint mix to pour over the wax model.  Next stage is to steam out the wax.  I purchased some emerald green gaffer glass which flows faster than bullseye glass.  I then handed it over to the technicians to fire in the kiln.

All the above I did without telling Andi how I was creating the piece.  I was excited to create it and then present it to Andi as a completed piece in the future.  In June I’d not heard from Andi for a few days and was worried.  A few days later she messaged me from the hospital… and told me she was wrapped in her AnnaBlanket which made me smile.

AndiBlanketAnd I let her into the secret and told her what I was doing with the pine cone and a few photos.

IMG_0362After all that work and with the terrifically important reason I was making this piece, the pressure was on for this to be perfect.  Only a few days later I was at college and the piece was cooling in the kiln.  I could tell that something had happened as the technicians asked me to look in the kiln.  The mold had cracked and glass leaked.  So incredibly upset.

GreenAndiBowlI love that damaged imperfect bowl.  It’s not useable and needs a lot of work to clean up or reuse the glass.  Right now, I can’t do anything with it except be disappointed and sad.  Maybe one day soon I’ll create something with the glass that will work and be an Andi treasure.

Sarcoma Support

Sarcoma UK‘s Annual report arrived in this post this morning with a little note “.. you may recognise a certain person inside :-)…”

Well there I am!   Taken at the Sarcoma UK’s Big Conversation Day last year.Sarcoma UKMy quote “Being diagnosed with a sarcoma can be isolating due to the rarity of this type of cancer. …” remains absolutely true for many today.

Sarcoma is rare.  Divide ‘Sarcoma’ into types – soft tissue and bone.  Then divide further into the different sub-types.  Each sub-type is different with it’s own surgical regimen and treatment plan.

Now try and find others who understand what you’ve been diagnosed with!

(This doesn’t just apply to cancer or sarcoma.  There are some very special/rare/unique diseases of other kinds that also must fear the unknown and isolation when diagnosed).

Fortunately with people having more access to the internet and feeling more confident to use it for support, this has meant a far further reach for support.  Certainly I’m not sure how I would have coped had it not been for our wonderful Facebook Phyllodes Support Group members.  For all the criticism about social media and all that is wrong with it, there is an enormous amount that’s right.

For those fortunate enough to be able to travel or live near a physical support group – Sarcoma UK run a number of support groups up and down the country as well as online forums.  More information can be found here

Visiting Andi and Washington DC

It’s difficult to describe my trip to Washington DC without gushing too much so I’ll try to make it brief (ish).

It wasn’t about visiting Washington DC.   Exploring the City during my trip was a bonus but it was more about who I was exploring with.

My trip was booked over 9 months ago.  The reason was to see a very dear friend of mine.  A friend who I had (until this trip) only met in person once at the C4YW Conference in Orlando.  But someone who I consider to be one of my best friends.

New Years Eve 2013/2014 I had been driving up to visit friends Nr Cambridge.  My phone beeped to say I’d got a Messenger message from Andi.  I glanced at the message and knew I had to pull over to read it in full.  Andi told me that she had just seen the oncologist who had told her that her recent breathlessness was because she now had a metastases of Phyllodes in her lung.  We exchanged several messages and agreed that as soon as I got home tomorrow we’d Skype or Facetime.  In the meantime I knew I had to do some research into spindle cell sarcoma mets to lungs (preferably from a phyllodes tumour, if the research existed).  One thing I was sure about though was what the oncologist wasn’t taking into consideration was the strength with which Andi has dealt with cancer for many years.  Andi was first diagnosed many years ago and has had continued recurrences and many many surgeries.  There was a point in 2013 when she was ‘growing’ new tumours at a rate of approximately 1 every 6 weeks!  Every time they’d appear, she’d face it head on, deal with it, the surgery and the ‘fear’ and pick herself up, put on a fabulous pair of shoes, lipstick and a smile and be back out before anyone knew she’d been in hospital… some occasions having surgery between dropping her daughter at school and collecting her at the end of the day!

As soon as I got home, I got the laptop fired up and spent an age looking through research papers and medical journals. Pah!  Found it.

My message “Re the 1 yr!   Soooo not happy about them saying that.. all the info I’ve looked at for spindle cell sarcoma mets in lungs is 80% 5 year survival after resection.  And that means you’re in the 80% of the 80% with a 126 year survival!!!   I mean who am I going to have to misbehave with when I’m really old and cantankerous?  YOU!!!!”

Shortly after New Year, Andi spent a great deal of time in and out of hospital receiving treatment.  Through it all, Andi faced it head on and to most people ‘watching’ you would assume everything was a breeze.  But there were truly rough days and only Andi (and her family) probably know the full extent.  However what fabulous and amazing people like Andi have in spades, is friends.  She had lots of visitors who stayed with her, looked after her and her family, shopped, cooked, cleaned and kept her company.  Our friend Trish, turned up and surprised her on her first day of chemo in the hospital – there’s a great video of Andi’s utter surprise and delight at such an amazing gesture for Trish to do this.  I hated being in the UK.  Too far to turn up briefly and I wasn’t sure that this Brit who’d only met personally once was the right person to be there to take care of things for an extended time.  All I could do was send cards, chat online and make sure she knew I cared.

In August last year Andi was over the worst of the chemo but still had some way to go… and British Airways kindly sent me an email with suggested flight destinations, including to Washington DC.  Well what’s a girl to do?

I found flights that worked and messaged Andi to check she’d be at home over the Easter break.  If I’m honest I didn’t give her much chance to say ‘No’ as the flights were booked very quickly!  For the intervening 8 months friends on Facebook will have been a little confused about several posts that simply have countdown numbers in them – 135days, 4hrs, 13mins and 44seconds etc.  But these countdowns were the exact timing until I touched down in Washington DC and knew that shortly after we’d meet again.

I loved our countdown.  I also loved the excitement that this brought with it.  The evening before I flew out was the first time I thought, eek what happens if we don’t get on?  (Turns out Andi had the same thought).

US Flag

I walked through the gates at the airport to be greeted by Andi and her fabulous daughter, Sam and two mahoosive hugs.  And then the laughter started!  For my entire trip we laughed.  Laughed until we cried (or as one of us put it, “peed, just a little”!).

Here’s a few photo highlights from my trip:

DSCN1830 We took a trip into Washington DC to do some site seeing…  Love this picture of Andi and Samantha.   So cute.

Washington9Washington10Incredible iconic buildings in Washington DC.  Stunning city with some truly inspiring monuments.  The respect and acknowledgement to ancestors who have fought for the US is heartfelt and real.

Washington6Washington5DSCN1844Such a special bond between Mum and Daughter.

Washington4We came across a park with some art and sculpture… errr anyone explain the one on the right?  No?

I was also taken to the place ‘where my people first landed’, Jamestown.

Washington7Samantha was somewhat bemused that I knew little of our British history in the US but I don’t recall being taught much about it at school.  Were we?

And Williamsburg where the whole town has been ‘preserved’.  History scenes were acted out in the streets and you could visit the stores who were still making hats (milliners) bakery (breads), silversmith etc using the original tools and working as they would have in the past.

WashingtonBUT as I said earlier, we didn’t stop laughing all week… on our tourist days we were also giggling at so very much.

Washington1Cheeeeter!  (Andi and Sam will get that!)

We found a maze and some stunning gardens.  What a shame I didn’t capture our, ahem, hide and seek on video!

Washington2

We also discovered that Andi has a little difficulty working hand-dryers.  Sadly we didn’t get her ‘air stewardess’ impression on video.  We did wonder what it’d do to your face in a highspeed hand dryer.

During my stay we had a LOT of games of Clue (the US version of Cluedo.  Samantha insists that anyone playing this game has to play in a British accent and was delighted that a real Brit was going to play.

Andi in her best English accent.  The call of the Peacock also came in very handy when I got separated from them in a Smithsonian Museum.  I heard the call from a long way away and ignoring all the people looking oddly at me & Andi, knew it was for me!

Andi’s husband Lane was on tour with the Washington Capital Ice Hockey team and only got home on the evening of PJEaster (Easter Day in PJs).  Poor chap returned to find us 3 in our PJs, playing Clue, hair unwashed, no makeup and giggling like a bunch of crazies at daft and silly stuff.  Only 10 minutes before he walked through the door, Andi had been tapping her forehead with the end of the pencil thinking is it Peacock or Plum in the Library?  Only she missed and tapped the pencil into her eye.  Sam and I couldn’t stop laughing and told her in no uncertain terms that it was self-inflicted!

A bandage (err headband) was found.  Andi put this over her eye, glasses and pencil propped into the bandage and continued playing.  Well actually I think we were still laughing at her when Lane walked in!

Andi ClueOn the Monday, Lane wasn’t working so the four of us headed in to Georgetown for a wander and lunch.  We found a fabulous spot by the river.

DSCN1897How fabulous is this family?

DSCN1895Oh and me and Andi.

After lunch we headed to Iwo Jima Marine War Memorial.Washington8And then on to see where Lane spends his time with the Washington Capitals, coaching them utterly brilliantly.

Washington3In the training room!

Samantha, the uber fabulous gymnast

and Lane

My final day, we went along to watch Washington Capitals training session.  What an amazing experience as a newbie to understanding the sport.   Incredibly fast and so skilled.  I loved that anyone can attend training sessions and see their sporting heroes working so hard.  If only we did this for our sports in the UK, youngsters wouldn’t assume you can rock up on a Saturday and earn a fortune without knowing about the many many training hours our sportsmen and women put in.

I was so very very sad to be heading off to catch a plane home.  I wanted to put Andi, Lane and Samantha in my pocket and bring them home with me.  It was so very weird being on a plane and not laughing and giggling or doing silly stuff.

Ooh and here’s your bonus video of Samantha singing.  That child has such a beautiful voice.

What an amazing trip.  Amazing in so very many ways.  To be part of such a close and incredibly supportive family for just a short moment in time.  We all know that laughter is the best medicine.. we filled our bathroom medicine cabinets this week.  Loved my time in Washington DC but most of all loved my time with the family.

CharlieChaplin Laughter

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!)

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.

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.

 

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.

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!

Five years has passed….

Hi Mum

I can’t believe it’s been five years since you left.  Sometimes it still feels like yesterday when we watched you close your eyes and go to sleep. Sometimes it feels like forever since I heard your voice.

So often I find myself reaching for the phone to tell you something or just to have a chat – I wonder when I’ll stop doing that?

As I start a new chapter in my life, I’ve been sorting through some more of your things and found some great pictures and cards.  My home phone also broke recently so I plugged in my old one only to discover a whole heap of voicemail messages from you.  How strange to hear our voice after all these years and to know that I won’t hear it again.

Five years since you passed is also significant for me and my health.  I found the lump on the morning of your funeral.  Gosh it’s been a strange five years.  Five years is so significant in cancer terms as most are able to consider it to be the point of ‘all clear’.  As mine was a special/unique/rare/whatever variety, I get to continue the regular checks beyond the five years.  It’s so odd to think you knew nothing of this part of my life, the cancer bit!

Anyway, thought it was time to post some more pictures of you…

Mum TennisSherborne School House Cup Winning Team of 1956

MumGlamI wonder why this photograph was taken?  Looking v glam

21and18Mum at our birthday party celebrating my brother’s 21st and my 18th

BarbadosHolsMum and I chilling in Barbados

MumPartyingBrilliant!  Love that I’ve found a pic of a squiffy Mum with a ciggy!

Miss you Mum

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