Archive for August, 2009

FOUR FINGERS AND THIRTEEN TOES – A POISON CHALACE

August 26, 2009

Television drama can, by its very nature, be a vehicle to relay a message to the viewing public on an issue which is high in social, moral or political content.  And so I have no doubt, that many Thalidomide impaired people settled down to watch Holby City on BBC1 last night (25th August 09) to see how using Thalidomide for medical purposes would be portrayed during primetime TV.

Mat Fraser, an accomplished actor in his own right, and also one of my many Thalidomide impaired friends, gave a good convincing performance of a patient diagnosed with Multiple Myeloma – a terminal cancer with limited treatments being available.  Having been diagnosed with Myeloma he was offered the choice of palliative care or a more radical treatment which, whilst not curing his condition, could prolong his life by possibly 18 months.  The irony in this case was the patient was a Thalidomide man in his late 40’s being offered the chance of “extra-time” by taking a concoction of drugs including Thalidomide – the very drug that had caused so much suffering during his lifetime.

The character had enjoyed a good life despite his impairment, and recently discovered he was the father of a child by his Vietnamese girlfriend.  He was therefore presented with a dilemma as to whether he accepted his condition or sought to prolong his life in order to spend time with his son before his death.  

What concerns me for viewers, who have not been affected by the Thalidomide tragedy, is that the outcome of the programme will be that far more people with Myeloma and possibly other conditions will now misguidedly demand Thalidomide.

Thalidomide is currently licensed for the treatment of Multiple Myeloma, but is still being prescribed on a “named patient” basis and for research purposes for other conditions.  The manufacturers continue to work on its development, and of course in the process make many millions of pounds from striving to regenerate what was commonly known as a ‘wonder drug’.

During the programme, the script writers touched upon the havoc Thalidomide wreaked in the 1960’s.  Mat’s character relayed his desire to just walk down the street – anonymously – and without people staring at him.  Had they been brave enough, I think the script writers could have gone much further… Throughout the world there are thousands of Thalidomide impaired people, not only of my generation, but also of the so-called second generation in South America, who struggle to cope with their Thalidomide impairments.  Chronic pain, depression and bodies ageing at a far greater rate than our peers, are just some of the problems that we face on a daily basis.

But I appreciate that patient storylines are there to link the continuing saga of the medical personnel at Holby, which run through the whole of the series and can only be limited in what they cover.

In 1999, I attended a convention organised by the Thalidomide Victims Association of Canada.  During the convention, one of the Doctors who spoke bravely told us how he foresaw a situation where Thalidomide impaired people might benefit from the use of Thalidomide for cancers and other conditions in later life.  

And so it was that last night’s programme became a case of drama meeting fact, which mirrors much of what we see on television.  The dilemma of health over risk is one which presents itself on a daily basis to those working in the field of medicine and medical research.  It was not an easy subject to tackle, and for me the jury is still out as to whether the BBC did justice to this contentious issue, or not.

One of the closing images from programme showed the Thalidomide man pondering over whether to take the drug.  In the end, his decision was made on the basis that by taking the drug he would be able to see his son, and some of you reading this blog may consider that to be the right decision. 

Having lived with my Thalidomide impairment, and seen the regeneration of Thalidomide gather pace over the last decade, I am still not convinced, that given its past, it is right for the drug to be used at all.

If science deems that Thalidomide should be used for patient care, then unlike the patient on Holby City who was just offered a pamphlet about the drug, those who are either advised or are considering using Thalidomide should remember its history and be told of its known toxicity so that they can make an informed choice on usage.

(More information on this issue can be found in Four Fingers and Thirteen Toes by Rosaleen Moriarty-Simmonds)

FOUR FINGERS AND THIRTEEN TOES – HOLIDAY PLEASURE DELIVERS CHINESE SURPRISE

August 22, 2009

So, the holiday season is about half way through, the weather has not been great but we can console ourselves with the knowledge that Christmas is about 19 weeks away – what a thought!

Generally, holidays allow you to look forward to spending some time with your family, and doing things together that you don’t usually have time for at other more hectic times of the year.  And for our family it is no different. 

Our holiday destination this year was agreed as being Jersey in the Channel Islands.  So, having packed and left instructions for family members looking after the house, we set off on our annual sojourn for 12 nights of domestic bliss!!

Our journey was pretty stress-free, we got the car onto the catamaran without loosing the exhaust, the lift from the car deck to the passenger deck was working and I entertained myself with some duty-free shopping to pass the four hour journey in search of that illusive yellow ball that we sometimes see in the skies above the UK.

Jersey holds really good holiday memories for me.  I went there on numerous occasions when I was a teenager and later as a wannabe independent young adult.  When James was born, we took him to the Island for his first proper “bucket and spade” holiday and he had a ball.

Over the years the Island has changed, and is now far more ‘user friendly’ for disabled people.  All of the attractions and places of interest that we visited were fully accessible, and as we all have an interest in history, and particularly the second world war, we learnt a great deal about the historic aspects of our destination that sometimes you can overlook when you go on holiday.

We also enjoy the opportunity to spend some time reading, but Stephen forgot his book.  As a trip to Waterstones was planned anyway for me to do some book marketing, Stephen and James browsed the fiction shelves whilst I had a meeting with the Manager. I’m pleased to say that the availability of “Four Fingers and Thirteen Toes” now extends to Jersey.

Being the parent of a teenager presents its own particular challenges in the vein of holiday entertainment.  What you do has to hold the attention of an apprentice “Kevin”.  It was also James’s pending fourteenth birthday, which just happened to fall about midway through our break.  James was obviously excited … “I don’t want anyone to know it’s my birthday … Grandma hasn’t arranged a birthday cake at breakfast has she? … And “don’t you dare sing happy birthday to me within earshot of anyone.” 

OK, it was hard, my ‘baby boy’ is growing up; but this proud Mum wanted everyone to know it was his birthday.  So we rounded James’s day off with a visit to the Noble House Chinese Restaurant just outside St. Helier. 

The last time we were in Jersey, we had dined at the restaurant and it had ample space for two wheelchair users, and so when Steve booked the table, he didn’t even think to mention the fact.  Needless to say when we arrived at the restaurant, the Maitre D’ was rather surprised.  It transpired that there were a number of educational and corporate seminars taking place on the Island during our stay, and one such group had a booking for around twenty five people.  The problem was that the restaurant had recently undergone renovations and was partly divided into small booths that were no good for us.

However, a table was laid for us in an inconspicuous corner of the main dining area, and we had a lovely evening tucking into some of the finest Chinese food that we have tasted for a long time.

Now, have you ever been in a room and you just can’t help but overhear the conversations that are going on around you?  Sometimes it’s idle curiosity, and sometimes you just connect with certain words and phrases that those in the room are using.  As I love to watch people, I quickly gleaned that the party in the restaurant were midwives on the Island for a midwifery convention.  I could hear a couple of welsh voices in the group, and not being one to let an opportunity slip away, I decided that this may well be a captive audience who might be interested in my book.

Having finished our meal, James and Steve left me to my own devices.  Armed with a few business cards promoting “Four Fingers and Thirteen Toes” I approached the table.  In circumstances like this, you never really know whether you will be greeted with indifference or genuine interest.  I am pleased to say I was greeted with a real genuine interest that filled the time for these midwives between hors d’oeuvres and main course.

On chatting to them, it was clear that the age range around the table was considerable – from those experienced midwives to those just starting out on a promising and worthwhile career.  We talked about the inevitable impact of Thalidomide and on how those in the medical profession help disabled people in their quest to have children, and then came a quite astonishing coincidence.

The lady who was in charge of organising the evening indicated that she had practiced in Manchester and had delivered the first baby to be born to one of the most severely disabled Thalidomide impaired people.  The mother in question was none other than one of my oldest and closest friends Janette Cooke (nee Mottley).  For those of you who have read my book, you will recall that Janette passed away shortly after her 40th birthday, but Janette’s successful delivery of her baby Kelly-Ann was in so many ways the catalyst for others, including me, to be given the chance of motherhood.

So with the holiday over, all the laundry done, and a mountain of work to catch up on, I’m now back at my desk, and of all the 100’s of emails in my inbox there was one that caught my eye.  It was promoting the TV appearance of another good Thalidomide impaired friend of mine – Mat Fraser.

For those of you reading this blog and having an interest in TV medical drama, can I recommend some viewing for you this week.  Watch out for Holby City on BBC1 this coming Tuesday, 25th August at 8pm.  It is running a storyline about a Thalidomide man who has cancer.  Nothing special about the cancer story line, but the irony in this story is that the patient is asked to consider taking Thalidomide to prolong his life.  I hold strong views on the continued use of Thalidomide which can be found in “Four Fingers and Thirteen Toes”. 

I don’t know how the Holby storyline progresses, but it will be interesting to see how this contentious issue is dealt with during prime time TV.  Let’s hope that it balances fairly the rights and wrongs of using the drug, and it allows the viewer to make up their own mind on whether the benefit of using Thalidomide is outweighed by the risk of exposure.  We shall just have to wait and see.