Lymphoedema Information and Resources

I'm presenting at a Lymphoedema Awareness Information Day in Enniscorthy on 25th April organised by the Hope Cancer Support Centre.

 I will be talking about what lymphoedema is, who is at risk and why and what a person can do to reduce their risk of developing it.  I will also be talking about what we do to manage lymphoedema.  In order to make it easier for folk who attend the talk to find the information resources I will be referring to, I have them all here:

The international consensus document

Best Practice for the Management of Lymphoedema

The Lymphoedema Support Network (LSN)

Lymphoedema Ireland

MLD Ireland

The British Lymphology Society

Macmillan online community

Lymphoedema Network Northern Ireland (LNNI)

Joachim Zuther’s Blog

Activa Healthcare E-Learning zone

BMJ online learning module

Hope this helps! ;-)

When is a physio not a physio?

I am often asked what the difference is between a 'Physiotherapist' and a 'Physical Therapist' and it annoys me so much that here in Ireland it takes me a while to answer, whereas in the UK, where our professional title is protected I can simply say 'they mean the same thing!' And what that is is that over there anyone using the title 'physiotherapist' and hence 'physio' or 'physical therapist' has gained an internationally recognised degree level qualification in physiotherapy (physical therapy), which covers anatomy and physiology, disease processes and the effect on the body, pharmacology, psychology, sociology and the application of clinical skills and a whole lot more.  Student placements are undertaken in all areas of healthcare including musculoskeletal, neuro, cardi-respiratory, paediatrics, womens heath, rheumatology, oncology etc and they are expected to be committed to their ongoing continual professional development as part of their 'licence to practice'. In Ireland 'yer man' off the street can come at you with a wet sponge, crack your back and dish out some well meant advice and call himself a physio! I find this both frustrating and concerning! I'm not going to enter into an arrogant dialogue about 'them and us'......there's plenty of that out there, just google (second thoughts I wouldn't bother), but the message I'd rather convey is just make sure that the therapist you are seeing is legitimately what they say they are, and the safest way by far of being guaranteed that they have received a standard level of training is to always make sure your physiotherapist is 'Chartered'.  All Chartered Physiotherapists are registered with the Irish Society of Chartered Physiotherapists we have to submit details of our ongoing professional development to register and we have to be fully insured - it's for your own protection! Now, where's me wet sponge!!

Is kinesiology taping as effective as a parachute??

I recently saw this article  in The New York Times and have to say it got me a little riled!! Basically it is asking whether Kinesiology Taping (KT) works, and more importantly where is the proof if it does.  It obviously doesn't work because there is no existing research evidence to support the claims made by I'd say thousands of professionals like myself and their clients that it does!! I say that with my tongue firmly lodged in my cheek!!  And here is my beef with 'evidenced based practice'.......we deal with people not statistics, cases or cohorts even the most evidently sound treatments are commonly never 100% effective for everyone.  You see there is a point at which the statistics become significant, meaning we can say something works.....and that's ok for those people that fall into the majority 'significant' group, but what about the ones that lie outside of it?? Or more importantly, what about listening to the INDIVIDUAL PERSON and when they say something works, and as a therapist we see something that works, and use this as our evidence?? I use KT tape loads, I've been using it for years, if I didn't think it worked, and if my clients told me it was a waste of time I wouldn't bother, simple as! I'll just share 2 examples - personally when I was pregnant I had all the usual aches and pains associated with a growing bump, didn't want to be taking painkillers so got myself taped, it made pregnancy much more comfortable, nothing adverse happened, I had full term healthy happy babies.  A client of mine who was in the palliative stages of pelvic disease had ascites (huge swelling of the abdomen) meaning that it was extremely uncomfortable and painful trying to move around her house.  I used KT to help lift the weight of her belly and give her lower back some support.  She was able to get out of bed easier, able to walk with less pain.  Nothing adverse happened, sure, she passed away within a few weeks, but I don't believe the KT caused her death, it actually helped her make the most of what time she had left as she was able to do more of the stuff she wanted to do.  But, if I had looked for the evidence to back up such applications I wouldn't find it.....so should I be doing it??   Hopefully this work  being done in Leeds will enable therapists like me to back up my many anecdotal success stories. While I'm on this topic, please do read one of my favourite ever research abstracts (if it's even possible to have a favourite piece of research) from the BMJ entitled Parachute use to prevent death and major trauma related to gravitational challenge: systematic review of randomised controlled trials.  There's absolutely no proof that they work, but I know I'd rather have one strapped to my back if I ever find myself gravitationally challenged!

The value of your £€'s

Friday saw Ireland's annual Daffodil Day, which is the Irish Cancer Society's main national fundraising day throughout the year.  Over the next few months Relay for Life will be held in a number of Irish counties, and again, the ask will be there - please dig deep and give a few bob (or more!). I recently had a conversation with a friend, who had had a dear friend die of advanced cancer.  Understandably she was very upset at the loss of her friend, but also very angry that her friend hadn't been one of the lucky ones, and what was the point in donating millions to cancer research when as far as she could see it wasn't making the slightest bit of difference. Does that sound familiar? I'm sure it will to many.  I think it it is totally understandable, I'd be fairly pissed off too losing a friend at such a young age, it is a tragedy! But, I have to say that in the 17 years I've been working in cancer care that I have seen exactly how our money and consequently research is making a difference.  When I started working at the Christie nearly every other patient had a horror story to tell.....how they'd had a delayed diagnosis resulting in their disease being beyond curative, or that they'd had all the treatment they could and now, well, now it was very much in the hands of the Gods (if that's what you believe).  I'm not working in an acute hospital ward anymore, but I see clients daily who have had a cancer diagnosis, who have had their treatment and are now CANCER FREE! People who are living beyond cancer, and have every reasonable expectation that they will continue to be cancer free! And even those who may have some residual disease, or 'hotspots' that need a close eye keeping on them, medically their management is very much a long term arrangement, with continued reassuring surveillance and a confidence that 'we'll deal with whatever happens' is very much the case.  Recently a very dear friend of mine had what was believed to be a recurrence of her cancer - I worried for her and felt sick all the time she was waiting on results.  She on the other hand was very calm, her medical team giving her the confidence to know that if it was back, then they have the ways and means to combat it again.  Years ago I fear that her options would have been very restricted! And that is all down to research, and every pound or euro that goes into a collection pot is in some way helping to ensure that more people will live beyond cancer, so please support Daffodil Day, support Relay for Life, YOU will be helping to save lives! #wewontgiveupuntilcancerdoes

Butterflys flutter by!

I love butterflies! I find myself gravitating towards anything I find in a shop that has a picture of a butterfly on it.  I even have my mother on the case, and she's bought me some lovely stuff for my treatment room in keeping with the butterfly theme.  But, my obsession is so much more than a cosmetic/aesthetic one.  I love the whole 'you are one thing, something happens, then you are something else' symbolism.   I have always thought that it very much mirrors the journey that a lot of my clients have been on, and I really can't find any better way of saying this than in this picture.....isn't that what cancer survivorship is all about! 

I'm so crap at this!!

So, I've decided again to try and pick up on my blog and made my 'resolution' to write with a bit more regularity, we'll see what happens! But anyway, as I was going back through my old posts I came across the last one where I make excuses for not writing for so long.....this one.....and guess what, I have the very same excuse now.  Baby Gerard came into the world in January and if there is anything that this wee man has taught me it is the value of sleep, something that I have taken for granted, for most of my life.  Even when Elaine was a small baby, we never had any sleepless nights as she was the perfect little sleeper, but my son, oh no - a very different story! He didn't sleep for at least 6 weeks, neither did I, or his Dad!  It made me realise that it is no wonder that sleep deprivation is used as a form of torture!  Anyway am glad to say that now, nearly 12 weeks down the line we are now managing to get longer and longer sleeps and normality seems to be resuming! The thought of getting back to work with only an hour or 2's sleep was scary, but thankfully I think I'm now in a much happier place and I'm looking forward to getting stuck back into work, and I will try my very best to keep regular updates on here, even if it is only me that ever reads them!! :-)

Why I Relay.....

I am currently involved in helping to organise Kilkenny’s first ever Relay for Life event, which is happening on 20^th and 21^st July 2013.  ‘Why we Relay’ is a very important question, so here is my go at answering it…….

When I trained as a physiotherapist I never in a million years would have expected that I would end up working in cancer care, but here I am nearly 20 years on and I often get asked what brought me to oncology in the first place.  Well, it certainly wasn’t planned!   In the hazy Summer of 1999 (that was the year Manchester United won the treble…YAY!!) I found myself working as a locum physio in a hospital that I really didn’t like, I won’t name it or say why I hated it, but I really didn’t enjoy going to work in the mornings.  It got so bad that one day I rung the locum agency and told them I wanted out….there had to be something better than this, to which I was told ‘we only have one other placement at the moment and that is at The Christie’.  The Christie is a very well know cancer treatment hospital in Manchester and up until that point, I had, Thank God, never had any reason to visit it, so knew very little about it apart from the fact that everyone in there had cancer.  I think my thoughts at the time went something like ‘What would a cancer hospital need a physio for?’ or more to the point ‘what sort of physio would I be doing in there’ and I suppose my next thought would have been ‘don’t they all die?’.  But, me being me and I’ll try anything once decided that it couldn’t be any worse than the job I was doing and hating presently, so the very next week off I went to my new placement in the Christie Cancer Hospital. 

From the very first moment I entered the Christie I was just amazed.  It didn’t feel like a hospital, it felt warm and friendly, homely and cosy.  There was a really positive vibe around the place and it had a brightness that shone even on the dullest, dreariest of days, and Manchester certainly has a lot of them!  – it’s difficult to describe, but anyone who has been there will know exactly what I mean.   

I felt that I had been completely welcomed with open arms.  The physio’s that were working there were just brilliant and it took me no time at all to feel like I was part of the Christie family.  My work placement was on the surgical wards so it involved lots of pre-op assessments and then lots of post-op ‘getting going again’ – clearing chests, sitting patients out of bed, getting them walking and then getting them home– for many of them, this was just the beginning of an incredibly tough journey, a  journey that would impact on every aspect of their lives and for some would last for years to come.   They needed lots of help and support, and I quickly came to the realisation that these patients were so deserving and needing of physiotherapy input – and that THIS was why I became a physio in the first place – this was my ‘physio home’.  I fully expected the work to be stressful, upsetting and emotionally draining, and although there have been occasions where I have gotten very upset and cried about certain patients and their situation, I have to say that generally working in oncology has been a very positive, inspiring and life changing experience.  It has made me realise the important things in life and has completely changed my outlook and perspective on things.

Within the hospital there was an incredible openness about cancer – the word itself wasn’t said in hushed tones or avoided like I had experienced in other hospital wards in other hospitals.  All the patients  knew that all the other patients in there had cancer somewhere and that they were in the hospital for treatment of the disease or it’s symptoms.  This openness allowed a great sense of camaraderie and solidarity amongst fellow patients and amongst the staff – we were all united in the fight against this awful disease.  It is often said that ‘laughter is the best medicine’ I certainly believe that it enhances the effectiveness of anticancer treatments after all that I have experienced and observed over the years. 

So ‘Why do I Relay?’ Well I Relay to say ‘Thank You’.  Thank You to each and every single person that I have had the privilege to work with and help along their cancer journey for allowing me to join them on their journey and learn so much, experience so much and become not just a better physio, but a better person too!

Ta Ra for now!