What Do You Say?

January 12, 2009

A conversation I overheard last week, has stayed with me ever since. It took place between a carer and an elderly resident at the nursing home. Tess is a widow who was living independently at home until a series of falls brought about a deterioration in her health. She was put into long term care at the nursing home as her grown-up family all live abroad. Tess is a much loved lady as evidenced by the constant stream of friends and ex-neighbours who visit her at the home. She is rapidly fading physically but still has all her other faculties.

nursing-home

Carer: Eat up, Tess, before your lunch goes cold

Tess: I’m not feeling very well today

Carer: You’re not feeling well because you’re not eating enough food

Tess: I’m not hungry

Carer: If you don’t eat your food Tess, you’ll fade away

Tess: I know… that’s what I want.

What do you say to someone like dear old Tess?


Facing the Facts

August 3, 2008

When someone receives a diagnosis of cancer it is the beginning of a long, lonely journey. Demystifying cancer is crucial, according to oncologist Dr. Robert Buckman, and leads to a greater ability to cope. Buckman is the author of a new book called Cancer is a Word, Not a Sentence, in which he gives readers clear, calm and concise explanations of a range of cancers from diagnosis to treatment. His aim is to help people recently diagnosed with cancer, to get over the initial shock and cope better with the facts of their situation.

In the book, Buckman gives clear advice on the do’s and don’ts following diagnosis.

DO try to a get a reasonable, general overview of your type of cancer.

DO get a small amount of trustworthy current information from a few reputable cancer websites.

DO accept, which means admit and acknowledge to yourself any uncertainty about the diagnosis and/or treatment. Uncertainty is always unpleasant but easier to cope with if you acknowledge that fact.

DO ask your medical team a few specific questions once you understand the general overview of your situation.

DO get a second opinion if you really think you need it.

DO talk to your friends and family.

DO breathe. Do spend a little bit of time every day doing something you really enjoy and thus look forward to it.

DON’T respond simply to the word cancer as a universal and total signal of doom and gloom.

DON’T go to the internet and collect hundreds of different views, opinions, home remedies and fringe medications.

DON’T think that things won’t change after you hear the first view of the diagnosis and treatment. Plans may well change as time goes on, so try to stay as flexible as possible.

DON’T or try not to ask the same questions too often. Asking over and over again usually means that it’s difficult for you to accept the answers.

DON’T get a third opinion if the second opinion is the same as the first.

DON’T feel you have to hold all your concerns and worries in until you know all the answers.

DON’T panic. There is plenty of time to get informed and make decisions.

Adapted from Cancer is a Word, Not a Sentence by Dr. Robert Buckman (Collins UK £9.99)

Cancer threatens fundamental assumptions about our lives. People’s personalities, coping styles, expectations, and past experiences all influence the impact of a cancer diagnosis. This book aims to help those with cancer understand better every aspect of their disease so that they can let go some of their fears and face the facts. Sound advice indeed.


How Great Thou Art

July 24, 2008

Last night, I listened to RTE radio’s ‘Documentary on One‘ and was completely blown away by ‘The Long Goodbye’, a hugely moving documentary on Alzheimer’s disease. It was first broadcast in January 2007 and has since won a silver medal at this year’s New York Media Festival. The documentary follows the daily routine of a couple who have been married for 44 years but who’s lives have been changed dramatically in recent years, due to Alzheimer’s disease.

“Seven years ago May started mislaying her handbag and amounts of money and her husband Matt noticed that she would start to cry during the day. She was diagnosed with depression but after a year and a half, it finally emerged that May had Alzheimer’s disease.

On the verge of his retirement, Matt was now facing a new journey with his wife May, as her carer. The couple moved from their home in London back to her hometown in the midlands.

As May’s illness has progressed, the couple have swapped roles. Matt has taken over all domestic tasks, a world he never inhabited during the first few decades of their marriage. As her carer and husband, Matt acts as May’s voice and is her rock.

This documentary looks at the relationship between Matt and May, as May’s ability to communicate decreases with progression of the illness while Matt’s responsibilities for her care continue.”

Compiled and presented by Sarah Neville
Production Supervision Liam O’Brien

Click here to listen to the documentary.

RealPlayer is required to open. Fast forward to 2.23 minutes and prepare to be blown away by the power of love. And as Matt would say “play every day as it comes.” Who knows what the future holds?

With thanks to RTE Radio One.


Blog Land

April 22, 2008

Today is the first anniversary of this blog. Hip Hip, Hip Hip, HURRAY!

Okay, so I know some clever dick is going to tell me that the tool bar shows The Biopsy Report started in June, not April! You’re right, it did but this blog actually came into existence this day last year. If you don’t believe me, scroll down and have a look at ‘archives’. The blog was originally known as Que sera, sera and after a few months of dipping my toes into the blog pool, I decided to make a few changes and start all over again. That’s when The Biopsy Report was born.

How well I remember those first few tentative steps into ‘blog land’. I hadn’t a clue what the whole blogging concept was about but my son, Robin, kept telling me “You’ll love it, Mum!”. He was right, of course. I totally adore it and now I can’t imagine life without blogging. My friends think I’ve lost it but they don’t know what they’re missing! He! He! Hardly a day goes past without me announcing to someone “but one of my blog friends says this” or “one of my blog friends does that” and it raises some interesting looks. Okay! Maybe I have lost it but I tell you what, if this is losing it bring it on, I want more!

So, some 22,000 visitors, 2 blog award nominations and a whole lot of fun later, here I am celebrating a year of giving an insider’s view, from a patient’s perspective, on what life is like within the health service. To sow the seeds for this, I had to put my story out there first and this had the added bonus of bringing welcome support and understanding from all my blogging friends. I used to talk about my medical saga as being a lonely journey. How things have changed! This blog has really helped me to find the plot and I’m hugely grateful to everyone who’s given support. Now that I’ve got my own woes out of the way, I’ve started to focus on the bigger picture of our rapidly crumbling health service. I don’t pretend to be an expert. I just say it as I see it and hope that by exposing the various issues, it will get people to think more about what sort of health service they want, and need. They say your health is your wealth. Sadly, in Ireland it’s rapidly becoming more of a case of your wealth is your health. I’m determined to do all that I can to raise awareness of the flaws within the system, as I see them. Some day, you may be very glad that I did.

And now, where did I see that great lasagne recipe yesterday? I’m off to give it a whirl! Thanks! Grannymar.


A Journey with Cancer

April 4, 2008

Have you ever stopped to think about what it would be like to receive a diagnosis of cancer? Unless you have been through the experience, you probably don’t think about it much, perhaps not at all. I’ve been lucky in that I’ve never been diagnosed with cancer, so far anyhow but several members of my close family have been down that road. For many years, I have found myself drawn to the world of cancer care. It’s a very special place and it feels like a privilege to me to be a part of it. Having recently completed some training modules in psycho-oncology, I’d like to share a little bit of what I’ve learnt with you.

When someone receives a diagnosis of cancer it is the beginning of a long, lonely journey. It’s a rocky ride both physically and emotionally, not least because of it’s never ending nature. People’s personalities, coping styles, expectations, and past experiences all influence the impact of a cancer diagnosis. Cancer threatens fundamental assumptions about our lives. Where life was once taken for granted, that luxury no longer exists. One’s very survival is threatened and that wonderful sense of certainty and expectation of continued life and health, is destroyed. This pervasive sense of uncertainty probably characterizes the journey with cancer more than anything else. It often lessens when things are going well, but it is a feeling that never completely goes away.

The experience of having cancer shakes your confidence in a profound way. You feel disconnected from the world. While excellent medical care is available today, many people report that they feel emotionally stranded.The demands of the illness and treatment can place a great strain on relationships, and significantly alter family dynamics. Family and friends may be just as emotionally affected by the illness as patients themselves, and sometimes more. When my own brother was diagnosed with terminal cancer, I found it very difficult to watch my parents going through the pain of losing a child. My brother was 48 when he died but nonetheless, the grief experienced by my parents was out of order with the natural process of life.

Patients experience many different types of loss as a result of illness. Self-confidence and self-esteem is shaken and a loss of identity can occur. A long-term illness affects the sense of control over one’s life. To counteract this, patients need to have meaningful and realistic goals set, to help to reinforce their sense of personal control. It can also be invaluable to speak with someone else who has been through a similar diagnosis and treatment, “the voice of someone who has been there”.

On completion of treatment, the journey is far from over. It’s not easy being a survivor of cancer. Patients experience a period of re-entry into the world where they are confronted by a future which they thought they might not have. They also have to undergo a process of learning to live life with the possibility of recurrence of cancer. This fear usually recedes with time as significant milestones are reached but it never fully goes away. Re-establishing hope for the future can take time. It’s not the same future that was taken for granted before the diagnosis.

I have read many books written by people who have been on a cancer journey but without doubt, the best one I’ve ever read was written by Kate Carr and it’s called “It’s Not Like That, Actually: A memoir of surviving cancer – and beyond (Vermilion: London 2004). It is a moving and honest account and it provides supportive and empathic advice for anyone living with cancer, their own or that of someone they care for. I cannot recommend it highly enough.

I dedicate this post to Laura ‘Distant Rambler‘, a blogger whose braveness and zest for life while in the darkest depths of her own difficult journey with cancer, is inspirational. Thank you! Laura.


Public or Private?

February 15, 2008

Do you have private health insurance? I do, as does over 50% of the Irish population. I have no problem in admitting that it offers a welcome safety valve in an otherwise chaotic system of healthcare. I can think of lots of other useful things to do with the money I spend on health insurance but I choose to make healthcare my priority. It’s not a decision I take lightly. I firmly believe that the way forward for our health service is a system of universal health insurance, funding a single tier health delivery model which promotes equity of health care. However as our health service is in such complete disarray, I feel I’ve no other option other than to continue to invest in health insurance. I’ve certainly had reason to be thankful for it over the years though it has proved at times, to be a bit of a double edged sword.

In late 2004, I was told that I needed some complex surgery carried out to arrest a chronic frontal sinus infection. I was under the care of a consultant surgeon who operated a private practice as well as a public service contract. With my health insurance policy, I’m fully covered for surgery in a private hospital with accommodation in a single room. However, my choice of doctors and hospitals is limited as I have a complicated medical history. On this occasion I was informed that the surgery would have to be carried out in a large public hospital where the necessary back-up facilities would be available. I was duly given a date for surgery and booked for post-op recovery in a high dependency ward. Two days before the operation, the hospital phoned to ask me to report immediately for admission. I initially protested at the stupidity of taking up a bed for two days pre-op but was told that a bed could not otherwise be guaranteed. I had no option but to agree to this crazy plan. By the time I had my overnight bag packed, the hospital phoned again to say that the bed was no longer available due to an admission from casualty. This process was repeated several times over the following two days until eventually, my surgery was cancelled due to the failure to secure a bed. The surgeon was furious as an operating theatre and a surgical team had been booked solely for my lengthy operation and it all went to waste that day. Frustrated by the restrictions imposed, the surgeon suggested that a stop-gap procedure be carried out in a small private hospital. I was duly admitted the following week and underwent some relatively minor surgery. However, this action also backfired as the surgery was unsuccessful and within months I had to return to discuss the bigger operation. The surgeon again insisted that the surgery should be carried out in the large teaching hospital and in order to secure a bed, he put special arrangements in place to allow me to be transferred to the nearby private co-located hospital, to recuperate. This was only possible because I had health insurance. It should not have been necessary.

I duly checked into the co-located hospital early on the morning of my operation and within hours, was whisked away to the operating theatre in the main hospital where I remained for the rest of the day. When I next came to, I was back in the private hospital in a shared room with three other women. I now had a sophisticated stent in my skull to facilitate drainage and a surgical wound over my right eye. I received good post-operative care and was discharged home feeling extremely lucky that all had gone so smoothly. About two weeks later, my post-operative pain began to worsen and I developed severe swelling around both eyes. I was asked to report to the busy A&E department in the main hospital where I was assessed and admitted. My health insurance again secured a bed for me in the private hospital and I happily settled into a 5-bedded room, secure in the knowledge that I was lucky to have a bed at all. Three days later, it was discovered that my surgical wound was infected with MRSA and thus began a lonely journey which continues to this day. The following week while I was longingly gazing out of the window of my isolation room, I spotted a woman I recognised in the car park. I’d shared a room with her in the private hospital a month previously, immediately following my operation. I waved frantically to attract her attention and she came over to chat to me through the open window. That’s when I learnt that her problem had turned out to be an MRSA infection and that’s when the penny dropped!

The airwaves are constantly buzzing these days with sad stories about the failures within the public health service but private hospitals are not the answer to the problem. They are selective and only serve to perpetuate the upstairs downstairs model of healthcare in this country. They do no offer A&E services which means that all patients requiring emergency treatment must be processed through the chaotic system in the public hospitals, regardless of their insurance status. Those with complex medical/surgical conditions generally cannot be treated in private hospitals because the medical back-up there is too limited. And anyone who takes out health insurance in the belief that they’ll be entitled to a single room, is in for a big shock if they are hospitalised. There is a huge shortage of isolation facilities across the country and single rooms quite rightly, have been prioritised for infectious patients and those who are dying. Our public health service is expected to provide all these service yet it’s on it’s knees through years of neglect and inadequate funding from the Government. Unfortunately, our Minister for Health continues to believe that the way forward is to promote the present unsatisfactory public/private mixture of healthcare by encouraging the development of co-located private hospitals. You have to question the wisdom of backing a policy that further perpetuates inequity of healthcare. We have a booming economy in Ireland but our health service is failing the most vulnerable people in our society. This is not about public versus private healthcare, it’s about saving lives.


Finding the Plot

February 6, 2008

Illness teaches us some remarkable lessons. Many of us go through life at such a pace, we rarely have time to dwell on the simpler things in life. We spend our days endeavouring to keep up with the demands of everyday life and it’s all too easy to lose the plot. When serious illness strikes, life is taken out of our control and we are forced into slow gear. For me, this has resulted in hidden benefits which have been beyond my wildest anticipation.

My medical history has taught me to expect the unexpected. This does not mean that I sit out my life waiting for the next thing to go wrong. Now, I’m no saint but I have learnt to appreciate the good things in life and to go with the flow when things aren’t so great. I’ve also found out who my real friends are and who I can rely upon for help, without needing to ask. I think one of the most important things I’ve learnt is that most people only ever want to hear that you’re well. I’m referring to that glazed look given in response to someone rabbiting on about their latest medical drama. When asked about my health, I will always respond positively even when the going is tough. If someone really cares enough they’ll probe further and if they don’t, then I’m not missing much anyway. I have experienced so much stop/start to my life through illness, it no longer holds any drama for me. Only those who need to know are informed. I know that if I showed my hospital CV to some of my family and friends, they would be astounded. That’s another lesson illness has taught me. Families are not necessarily the most supportive when recurrent illness strikes. A once-off event is fine and lots of fuss will be made but don’t expect to get sympathy on a regular basis or you might be in for a surprise. I’ve come to the conclusion that chronic illness is sometimes seen by others as some kind of failure and thus it is not openly acknowledged. I’ve been lucky in that my immediate family are very understanding and supportive and I also have some amazing friends who I never, ever have to ask for help. I used to despair over some people’s odd reactions to illness but these days I see that sort of behaviour as their problem, not mine and I’ve learnt to let it go. Illness does have some bonuses. Adversity sometimes brings out strengths you never knew you possessed and this all helps to ease the lonely journey. Illness has certainly helped me to become more insightful and I find this invaluable in everyday life. When life grinds to a halt, I get to see the world through different eyes. I have referred to this in the past as discovering magic and I can assure you that life takes on a whole new perspective. I’m not a particularly religious person but I’ve been left with a profound belief that I am not only incredibly lucky, I also think I’ve found the plot in life.

It’s a real privilege and a self-indulgence to have the luxury of this forum to share my experiences of illness with anyone who cares to read my story. I’ve received some lovely comments in response which I treasure and for which I’m truly grateful. In early January this year, my blog was short-listed as a finalist for a worldwide Medical Blog Award (Best Patient Blog category) and I was honoured to be the only Irish blog selected. Last week I was nominated for an Irish Blog Award (Best Personal Blog category) which again, is a totally unexpected bonus. I’ve put my story into words in the hope it will help others to see that there’s two sides to every story. My medical saga may not have ended but I live in hope of better times ahead, secure in the knowledge that I can cope with whatever comes my way.

I have one final plea which comes from the heart. I’d like to take the liberty of reminding you to reach out to anyone you know who may be unwell – it doesn’t matter how large or small the gesture is – I simply plead with you not to wait to be asked to help. There’s nothing lost, but plenty to be gained. Take it from one who knows!


MRSA – A silent stigma

September 30, 2007

A diagnosis of MRSA (methicillin-resistant Staphylococcus aureus) infection is not something to be taken lightly. It has the potential to become a life-threatening condition and intensive treatment with antibiotics will be required. However, there is another side to the diagnosis which is rarely talked about. There is the stigma attached to having an infectious condition and it forms a significant part of the MRSA journey. Hospital staff are best trained to deal with medical emergencies but their management of patients with an infectious status sometimes leaves a lot to be desired.

When I was first diagnosed with MRSA I was treated with the utmost urgency and received excellent care. I was barrier nursed in isolation whilst undergoing intensive intravenous antibiotic therapy. This involuntary withdrawal from the world took some getting used to but I quickly developed my own coping mechanisms to get through that lonely time. However the ‘fun’ really starts when a patient has to come out of isolation for investigation or treatment. When an MRSA infection is confirmed by laboratory tests, a patient’s hospital chart is labelled with a luminous sticker proclaiming their infectious status. This is a method of alerting staff to take the necessary precautions to minimise the spread of infection. Hospital staff however should be aware of the sensitivities involved for MRSA infected patients.

I had to be taken to theatre for some minor surgery while still being treated in isolation. Patients with a positive MRSA status have to wait until last in the queue to go for surgery because of the very real potential of contaminating an operating theatre. So after a very long wait while fasting all day for the general anaesthetic, a porter finally arrived to transport me on a trolley to my destiny. We were escorted to theatre by a very junior nurse who was given the task of carrying my hospital chart. I was duly lined up in the pre-anaesthetic area alongside a row of other similarly nervous patients to await my turn in theatre. My surgeon and his surgical team appeared briefly in an open doorway and made encouraging faces at me. Suddenly, a loud shout came from another direction and to my horror, I heard the theatre sister roar from a distance “get that MRSA patient out of there, NOW!”. I saw the surgeon raise his eyebrows in disbelief at what had been heard and in an attempt to lighten the moment, we exchanged grins about ‘SHE who must be obeyed!’.  The theatre sister however continued to loudly remonstrate the junior nurse for accompanying me (the infectious patient) to the wrong location and any humour in the situation, rapidly dissipated. The junior nurse was mortified to receive such a public dressing-down and I felt very humiliated to be treated like a leper in front of all the other patients and staff. It was as if I didn’t exist as a person – I was purely seen as a health hazard which had to be quickly removed. A nice welcome back to the ‘real’ world after spending so much time alone.

I have since sat in crowded out-patient clinics and had the clinic nurse make insensitive enquiries in front of everyone else. You do get better at handling the ignorance surrounding MRSA but you never get used to it. MRSA patients have enough problems to contend with without having to tackle the issue of stigma as well. The sticker on a hospital chart may change colour once MRSA clearance has been obtained but it appears that you remain a ‘labelled’ patient for evermore. The legacy lives on.


Skin Deep

September 12, 2007

I’m pretty choosy about the television programmes I’ll watch these days but when I see something produced by Mint Productions, I never fail to be disappointed. Last night saw the screening of another programme in the RTE series ‘True Lives‘. It was called ‘Skin Deep‘ and covered the topic of living with a severe facial deformity. The message conferred by the programme was clear-cut – it’s no fun being facially different. Lives are changed forever by a facial deformity. It can have a devastating effect on people who have to cope with being ‘different’ in a world that’s obsessed with image and appearance.

Mr. Michael Early, Consultant Plastic Surgeon, explained how the anatomy of our faces and our facial expressions affect communication. He talked about the ‘triangle of communication’ – the area of the face between the eyes, the nose and the upper mouth. The programme featured five people with a variety of severe facial deformities which had been caused by genetics, or by an accident or as a result of cancer. These remarkably courageous individuals all possessed huge insight into how they are perceived by ‘normal’ people. Some people give them a ‘funny’ look, others look ‘curious’, while some take a ‘serious’ look and then ‘look away’ ashamed to have been caught staring. People who have a facial deformity lose their anonymity and become ‘different’. Their faces look unfamiliar and don’t conform to what ‘normal’ people look like. Society can be very cruel at times.

This programme has certainly helped me to keep my situation in context. I was pleased to learn last night that I’ve already taken the first step towards acceptance of my new look following recent surgery – I’ve got used to seeing my new face reflected in a mirror and no longer search for the ‘old me’. I know that true beauty comes from within. People need to look past the face which is after all, only skin deep – it’s what’s in the heart that really matters.


Discovering Magic

August 11, 2007

People have often said to me “I don’t know how you cope so well with all that’s happened to you”. I know how – it’s not about ‘coping’. It’s about making the most of the options left available. I’ve found that it helps enormously to try to concentrate on the positives rather than negatives. Having a good sense of humour has it’s benefits too. When used appropriately, humour is a great way to dissolve anxiety. There is always something left to celebrate in life no matter how much sh*t is thrown at you! My own experience of recurrent illness has made me more resilient and I hope, more insightful as well. I’ve learnt how to appreciate many of the simpler pleasures in life – like savouring a mouthful of delicious food or simply being in the company of family and friends. I find I want to grab life with both hands and enjoy. You sometimes hear amazing stories about people who are terminally ill, who insist that they’ve never been happier. I think I’ve discovered their secret!

When someone is hospitalised as an emergency, they have little control over what’s happening to them. Privacy is lost as well as a comfortable bed, nice food, and the company of loved ones. Life is simplified down to basic needs and you are relieved of all the normal demands on your time. Horizons narrow. Your whole world gets narrowed down to what’s happening to you, and around you. Despite the hustle and bustle of the daily routine, life in hospital can prove to be a very lonely experience. Solitude tends to magnify everything – it can be difficult to manage, but it can be liberating too. It’s been my own privilege to discover that this solitude brings with it a sense of tremendous vision. Whenever I’ve been at a low physical ebb, I’ve often found that I can see the world through different eyes. Life becomes ‘black and white’, the grey areas dissappear and I find I have the ability to clearly visualise solutions to problems. It’s magical! As I recover my physical well-being, this clarity of thought gradually fades and I happily let it go in celebration of my return to good health. Sadly, not everyone has this choice or good fortune.

I explained this phenomena to an acquaintance recently and he kindly sent me the words below, which I now treasure.

“When you experience the power of your wisdom and the power of things as they are, together, as one, then you have access to tremendous vision and power in the world. You find that you are inherently connected to your own being. That is discovering magic” (Chögyam Trungpa).



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