Susie Long

Living in Kilkenny I have always been very aware of the plight of Susie Long.  Susie died of advanced cancer in 2007.  Her story is a tough one to hear.  Having presented to her GP with worrying symptoms, Susie then had to wait for 7 months before a colonoscopy examination took place.  By this time, the cancer, which had been growing all the while was at an advanced stage, meaning that Susie’s life expectancy was dramatically reduced by the time she received a diagnosis. Susie spoke out publicly about the unfairness and the inequality that she had experienced in the Irish health service.  It was unfair and inequitable because Susie did not have health insurance, if she had, she would have gotten the colonoscopy done within a few days, her cancer would have been detected at a much earlier stage, and who knows maybe she would still be here today to lead the campaign against injustice herself.  

It is really heart-breaking to hear similar stories – endless visits to the GP, endless waiting on scans and investigations, endless worrying.  When I began my career in cancer care in the UK in 1999 these stories were fairly commonplace then.  Having left the UK in 2005, I am not able to comment on how effective the introduction of the ‘2 week wait’ standard has been – that anyone who presents to their GP with suspected cancer will have been seen by a specialist within 2 weeks, but I can remember being on the wards just before I left and hearing the stories about how quickly tests and treatments were organised, so I was optimistic that the tide was beginning to turn.  Here in Ireland, I can’t help thinking that we have a  long way to go yet.  The 2 tier system, which so badly let Susie Long down is still very much in place. After many years of wasted overspending and now in the days of cuts and restrictions it is quite possible that the gap between the 2 tiers is now even wider.  And it’s not just the cancer services that I worry about, it’s the system as whole.  There is rarely a week goes by without some kind of scandal or horror story related to our health services. 

The new government have pledged to reform the health service in Ireland.  Their plan aims to have a Universal Health Insurance scheme in place by 2016 – which effectively will mean equal better healthcare for everyone.  Hopefully by then our health statistics will reflect this, but remember that behind and within every statistic, there is a person, a family and their unique story.  Susie Long was such a person, her family were such a family, and their story cannot be ignored.  

The Susie Long Hospice Fund  aims to  “To provide the highest possible quality of end-of-life care for patients and their families through the establishment of a 12-bed hospice in Kilkenny”.

Lymphoedema - reducing the risk.

For anyone who has had a node clearance as part of their cancer treatment, the risk of developing lymphoedema can be a major cause of concern.  Typically lymph nodes are surgically removed from the armpit or the groin in an attempt to fully remove any cancer cells from the body.   To be extra sure, sometimes radiotherapy is also used, and this can further impact on the already depleted lymphatic system.   The lymphatic system is the body’s own ‘waste disposal’ system.  It transports fluid and molecules from the tissues to the venous circulation whereby waste products can then be eliminated.  Lymphoedema is an abnormal collection of fluid, proteins and fat within the tissues as a result of a dysfunctional lymphatic system.   The lymph nodes are a vital component of this system, and in order to fully understand the importance of reducing the risk of developing lymphoedema we need to have an understanding of how the body would normally utilise the lymphatic system.  Imagine getting a bee sting on the back of your hand.  You would probably feel pain, see redness developing around the area, and then see swelling occur around the site of the sting.  This redness and swelling is an indication that the body has recognised that the protective barrier of the skin has been breached and that its own defence system has been deployed to the area to breakdown and remove any infection or foreign particles that should’nt be there.  The local swelling, which includes the nasty bits of the sting, will then be transported to the lymph nodes in the armpit where they will then be emptied into the central lymphatic system, which will ultimately remove them to the circulatory system where they can be disposed of.  In a person who has had their axillary (armpit) nodes removed, the body will respond in exactly the same way to a bee sting on the hand, but it is  the removal of the local swelling that is now going to be much reduced, resulting in the fluid staying in the hand, which can be the onset of lymphoedema.  It is therefore vitally important for anyone who has had lymph node removal to take precautions every day for the rest of their life to try and minimise the risk of getting lymphoedema in the first place.  Avoiding any kind of breaks to the skin on the affected limb is really important, and a break to the skin that is intentional, for example the introduction of a hypodermic needle for the taking of blood of the giving of drugs can be every bit as dangerous as a bee sting, cut, scratch, or burn.  It is also important to avoid any kind of compressive forces which may produce a tourniquet effect, for example, tight fitting clothing and jewellery or the pressure cuff used when taking blood pressure.   Looking after the affected limb by keeping the skin well moisturised and exercising regularly are hugely beneficial.  It is also important to be vigilant of any changes in the limb, including changes in shape and volume, feelings of tightness or heaviness, pain and reduced range of movement and discuss these with a lymphoedema practitioner at the earliest opportunity.  Lymphoedema can be an extremely debilitating condition, but if it is recognised and treated in its very early stages, it will be a lot easier to manage it in the long term. 

Lets Break Cancer

I like a challenge, and I love the Livestrong record setting bonanza to raise awareness about cancer in young adults.  Hmmm, really trying to think about a record that I could break........Any ideas gratefully received!

Living with Cancer - supplement in The Times today

"1 in 20 of us are living with cancer" so says Todays Times newspaper, which includes a 20 page supplement - Living with Cancer, full of really useful information and inspiring stories.  It can be viewed online here.
I'm looking forward to reading the hard copy - that's if my Dad managed to get me one!

Calling all breast cancer survivors in Dublin

There is a huge amount of research evidence to prove that exercise and physical activity are beneficial for people with cancer for many many reasons, from increasing strength and fitness to enhancing wellbeing and quality of life and for some survivors, actually reducing the chance of recurrence of the disease.  I am delighted to see that The Irish Cancer Society are about to commence a programme for breast cancer survivors who are 12 months post surgery to evaluate the impact of an intensive, structured exercise programme.  The programme enrols at the weekend (9^thApril 2011) and will involve a commitment to exercise 3 times a week to the end of the year.

More details can be found here.

If you have completed treatment for breast cancer and are in the Dublin area, and are able to commit to the programme, why not give it a go – not only will you be improving your own fitness and wellbeing, but you will also be helping towards increasing our knowledge of the effectiveness of exercise and activity, which in turn will benefit us all in our fight against cancer .

Wrong things, right reasons?

I can remember the very first time I treated a person with cancer and the lasting impact it had on me.  I was a student physio on an orthopaedic placement.  I was in the second year of training, so by this stage would have my own patient caseload which I took responsibility for under the supervision of my clinical mentor.  Orthopaedic rehab then, I’m not really sure what happens now as haven’t worked in the area for so long, was vey protocol led – Day 1 post Total Hip Replacement = check the patient’s chest, teach the patient circulatory exercises to be performed on the bed and get them up for a walk.  The lady I was seeing had broken her hip as a result of metastatic bone disease in her femur.  The morning after her surgery, as I approached her bed, I could see the lady was asleep and her husband was sat beside her holding her hand with his head resting close to hers, and he appeared to me to be whispering into her ear.  I went over to the bed, said hello and explained who I was and asked how the lady had been through the night.  The husband ushered me away from the bed and told me that the family had received some very bad news and they would appreciate if I would leave them alone.  This seemed an entirely appropriate request, so after explaining to the husband that I would check back in with them tomorrow, to which he agreed, I went about my business with my other patients.  Later that morning on discussing my patient caseload with my supervisor I relayed the story – I felt like I was intruding on the families space, so I didn’t treat the lady, I would go back tomorrow.  It was then pointed out to me that this lady was under my care, and I hadn’t done my job correctly and should she get a chest infection or a pneumonia then she probably would never leave the hospital, plus the new hip needs the stimulation from weight-bearing activity to help healing, so I was to go back and treat the lady TODAY, not leave it until tomorrow.  I can remember spending the whole of my morning break time crying in the toilets, then when it was time to go back to work, cleaning the smudged mascara from around my eyes taking a deep breath and attempting to flush my humanity away with the crumpled, damp, mascara stained tissues.

 Writing about it still evokes strong emotions within me.  But to this day, I maintain that I did the right thing that morning..….or maybe I did the ‘wrong thing’ but for the right reasons.  And this is just an example of where medicine, healthcare, rehabilitation etc is never just black and white –  there are many policies, procedures, protocols, checklists etc to guide us in our practice, and these are vitally important in ensuring a consistent quality service is provided for all, but within all of this and at the centre of all of this is a person and their family and the humanity needed to appreciate and understand this is something that cannot be measured or accounted for by the ticking of a box. 

An important message from Podge & Rodge

I came across this video on YouTube which was posted by the Irish Cancer Society.  If you're not familiar with Podge and Rodge it can seem a little vulgar, but believe me, for these 2 little fellas, this is quite tame......and they are delivering a very powerful message that we should all listen to.

Putting the person first.

I want to acknowledge all the very positive comments I got both on here and elsewhere about this blog, so I am encouraged to continue....
I want to write today about 'Person Centred Care', a concept that I was introduced to only as recently as about 4 years ago, but surely something that as a holistic healthcare worker, I would naturally be providing in my daily work... right??
The very essence of Person Centered Care is that very important word 'Person'.  What does that mean?  Well in order to answer this, I am going to use a very real example for myself - my experience from setting up my blog yesterday.  I'll start with a wee bit of history.  From about the age of 11 or 12 I always knew what I wanted to be when I grew up, I was going to be a physiotherapist (another post for another day), so that day in June 1997 when I got the news that I had passed all my exams and I could finally say 'I am a physiotherapist' was one of the proudest days of my life.  I'd done it, all the years of hard study through school, college and university had paid off and now I had the title to prove it!  For many years I wore my title like a badge of honour, and I still do at times, I am still very proud of my achievements.  So yesterday, when I was setting up my profile I included a list of topics that I am interested in as a physiotherapist...cancer, rehabilitation, palliative care, hospice etc.  and left it at that.  I said to myself, I won't add any books or music - that information doesn't need to be there.  Then after a few hours I returned to my profile and felt like a bit of a fraud- here I was wanting to connect with 'people', yet giving nothing away about the person who I know the most about, me! How cold and clinical was that!  Had I spent so much time and energy defining myself as a physiotherapist that I had lost touch with the fact that actually I am a person first and foremost? The fact that I work as a physiotherapist provides a context, structure and framework for me to work with people in my job (for example, I follow a professional code of conduct, I have a certain level of knowledge and I am trained in techniques and skills to apply when faced with a particular problem etc), but I believe that the success of my interactions depends very much on me being a person, and my ability to relate to the other person with empathy, compassion and caring.  So for me the first step in providing Person Centred Care is acknowledging the person that it is within me.  I will write more on this, as it is something that I feel very passionately about and also it is something that on deeper reflection of myself over the years, I realise that I am only just beginning to learn and take on-board.  I have lived and worked in a 'Patient Centred Care' model for so long that it will take me some time to rearrange the circuitry in my own brain, but for now I am going to start with this: I am Joanne, I am a wife, daughter, sister, niece, aunty, friend and colleague, I like lots of things in my life, especially those things that make me laugh, I love lots of people in my life, especially those people that make me laugh, I am a bit of a hoarder, I like to keep things that remind me of important times in my life, especially those times when I laughed.....I have many aspirations and hopes that in the future there will be many more things, people and times that make me laugh, and oh yes, I am able to work as a physiotherapist.

Where do I start???

Hello,
You may have got here expecting to find information on physiotherapy and cancer and all things connected....and in time you will, but first please accept my apologies that I am very new to the 'blogging world' so am still trying to find my feet here.
I had every intention of setting up my blog this morning and posting up something on exercise and cancer - something that the viewer might find useful. But alas, the best laid plans and all, so I've changed tack.  I am going to tell you why I am starting to blog.....and it is all as a result of a conference I attended during the week (once I've learnt how to attach links to other sites, I'll link to it on here) which really challenged my own thinking on the use of the internet and social media in healthcare, and for me as a professional.  Apparently, and I can believe this, many people will approach the internet when they are looking for information on healthcare - why wouldn't we when there is a whole world of information accessible right at the end of our fingertips! I am also led to believe that nowadays people are not just looking for information, but also for the opportunity to interact and link in with others out there in that big wide world, which thanks to the internet seems to get smaller everyday.  So I was thinking to myself  'where do I fit in to all of this?'  And putting the 2 and 2 together was really simple - I might well have something somewhere locked inside my own brain, which I have collected on my journey over the years in my professional role which just might be of use to someone out there, so don't I have a responsibility to share that?
So that is the aim of my blog.  I qualified as a physiotherapist in 1997 and since then have worked in a variety of roles, but the majority of my time has been working with people who have a cancer diagnosis and who were going through treatment, surviving beyond treatment, living with cancer, or dying from cancer.  I must have worked with thousands of people from all different backgrounds, all with very different personalities, all facing very different issues and challenges - after all aren't we all individuals, and for me it has always been a great privilege and honour to be there and to help in any way I could.  Every single person I have worked with has also, in their own way taught me something, which I hope has made me better able to do my job, so I have an enormous debt to repay.....and hopefully I can start to do that through this blog.
So that's my first post done, check back soon.....please.