Emotional Storm

March 12, 2008

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I watched a television programme recently about Irish patients with cancer. Any journey with cancer is an emotional roller coaster and this programme was no exception. My emotions were completely raw by the time it was over. One particular scene strongly resonated with me and brought back a memory I’d completely forgotten about.

The programme did not make for easy viewing. If you had recently been diagnosed with cancer or had suffered a bereavement, I would imagine it must have been very difficult to watch. We were not spared the stark reality of cancer. One fine lady with a wonderfully positive outlook on life, was given the news that she had advanced terminal cancer which was inoperable. She amazed me in the way she took this terrible news totally in her stride. She died a few short months later. We watched another elderly man who had been diagnosed with rectal cancer, undergo pre-operative radiotherapy and chemotherapy to shrink the tumour before surgery could proceed. Thankfully in his case, his operation was totally successful and no further treatment was required. It was his return home that resonated with me. As I watched him sit down in his favourite armchair while his wife went to put the kettle on, I witnessed him experience the realisation of how good it felt to be finally safely home.

When I returned by air last year following complex surgery in the UK, I will never forget the emotional storm which took me completely by surprise as the wheels of the plane touched down. I’m not particularly patriotic about my country of birth but on this occasion I was never so glad to be back in Ireland. In preparation for the surgery, I had put meticulous plans in place so that life would run as smoothly as possible during my absence from home. Any thoughts on the experience that lay ahead never went further than hoping for a successful outcome to the surgery. It was a particularly risky operation but all went well thanks to the expertise of the surgeon involved. My post-op stay in the NHS hospital also went smoothly and before I knew it, the day arrived when I had to make the long journey home. Unfortunately, I became unwell on the way from the hospital to the airport and had to be wheelchair boarded on to the plane. This experience taught me a great deal about the difficulties faced by disabled people in dealing with the ignorance of those lucky enough to be able bodied. I found the flight home exhausting and it was a relief to see the night-time landing lights come into view. As the plane touched down, I was overcome with emotion and burst into tears. I think at that moment I had the same realisation that the elderly man with cancer had experienced. I’d been able to plan ahead for most eventualities but the one thing I hadn’t contemplated, was the enormity of the relief to have survived the ordeal. I can’t tell you how good it felt to be home.


Have Your Say

February 18, 2008

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I am a patient; I am an MRSA story; I am one voice; I am not alone.

If you have a story about the health service in Ireland and would like to air your views, here is your opportunity.

Newstalk 106 would like to hear from you about your experience, be it good, bad, happy, sad or inspiring.

You can email your story to healthfamine@newstalk.ie or text HEALTH to 53106 (texts cost 30c).

All day on Wednesday 20th February 2008, Newstalk radio will be taking your calls, comments and stories about the health system. Stories will be aired throughout the day.

On Thursday 21st February, your comments will be fed into a live debate on Your Call with Brenda Power from 9am.

This is your chance to have your say about the health service. Don’t miss it!



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.


Blog Awards

February 11, 2008

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The Biopsy Report has been short-listed!

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And the red carpet has been rolled out!

I was out for most of the day and came home to find ‘The Biopsy Report’ positively bubbling with excitement. This blog has made it through Round 1 of the Irish Blog Awards and it’s been awarded a Vanilla Award!

I learnt this evening that my blog has been shortlisted for an Irish Blog Award, in the Best Personal Blog category sponsored by Microsoft Ireland’s Developer and Platform Group. I’m not often stuck for words, but this news has left me flabbergasted. I am humbled to be listed alongside some eminent bloggers whose blogs I already admire and enjoy enormously. I am also proud to appear on this particular shortlist as thanks to the huge expertise of Damien Mulley, the Irish Blog Awards now have an impressive judging system in place. All of the nominated blogs have been assessed by a panel of judges and advancement to the final round, was based solely on merit. This is not a popularity contest and so I happily recommend you pop over to the Irish Blog Awards to have a look for yourself.

Then the absolute icing on the cake today, was to receive a Roar for Powerful Words award from Absolute Vanilla…(& Atyllah). Vanilla is a writer of enormous talent and her beautifully illustrated blog has a huge following of loyal fans. When Vanilla first left a comment on my blog, it blew me away totally. She has a powerful and very moving way with words and I feel privileged to be able to share in her world. I can highly recommend a visit to her blog.

When I started writing this blog last year, all I knew was that I had a story to tell as a result of my experiences as a long-term patient. I was a total newcomer to blogging but thanks to masses of help and encouragement from my son, Robin, I soon discovered a whole new and exciting world. I never could have imagined that the blogosphere would turn out to be so much fun. If you’d told me that I’d get a thrill out of hitting a button that says ‘publish’ or ‘submit comment’, I’d have laughed at you whereas now I’ll happily admit that I’m totally addicted to pushing those buttons. I’ve found friends, companionship, humour, insight, wisdom, interest, and much more through blogging. Thanks to everyone who’s contributed to this fun and I’d especially like to thank Absolute Vanilla and the Irish Blog Awards for giving ‘The Biopsy Report’ a real reason to be proud. I salute you all.


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!


A Sting in the Tale

January 27, 2008

It’s almost ten years ago since my daughter had a big operation in the Children’s Hospital. There were a few unexpected set-backs along the way but otherwise she sailed through the experience with the benefit of youth on her side. If only everyone could be lucky enough to enjoy this kind of outcome.

My 8-year old daughter was admitted to the hospital the day before surgery to undergo routine pre-operative tests. She was accustomed to being in hospital having required frequent treatment throughout her childhood for chronic kidney disease. On this occasion she was delighted to be allocated a bed beside the window where she and her all-time favourite teddy bear, called LoveBear, could watch the world go by. I was given the key to a very small, sparsely furnished cell-like room in an adjacent building and this was to become my home for the following ten days. Early the next morning, my daughter was wheeled off to the operating theatre bravely clutching LoveBear, her loyal companion. Several hours later she was returned safely to the ward sleeping soundly despite all the paraphernalia associated with complicated surgery. When she came to, the only thing she wanted was her adored LoveBear but to everyone’s horror, he was nowhere to be found. His trip to theatre had not gone according to plan and there was now great concern for his welfare. After a frantic search, he was eventually located in the hospital laundry looking a lot worse for wear. He had accidentally been put through an extremely hot wash with some sheets and now needed urgent resuscitation. He survived the ordeal and was soon tucked up in bed back with his loyal owner.

The following days went relatively smoothly and I, like all the many other parents there, spent long hours keeping watch at the bedside. Whenever my daughter slept, I would return to my own sleeping quarters for a few hours rest but I found it very difficult to sleep there. I had to keep the window shut because of noise in the street below and this left the room far too hot and stuffy. As the days went on, I developed an intense headache that wouldn’t go away. I put it down to the heat in the hospital and continued to take medication every four to six hours to dull the pain. I finally woke one morning to find that one eye was hugely swollen and had completely closed over but at long last, I had relief from the intense pain in my head. The hospital staff soon sent me packing to see my own doctor and later that day I was admitted to another hospital for an emergency surgical procedure to drain an abscess in the frontal sinus of my skull.

I awoke the following morning feeling somewhat sorry myself having been told that I had to stay in the hospital to undergo a course of intravenous antibiotic therapy. I was worried about how my daughter would cope in the children’s hospital without the help she needed. Of course, she was absolutely fine as her Dad took over the role bringing welcome new energy to the equation and they got on famously together. My own surgeon appeared before breakfast at my bedside and informed me that I’d had a lucky escape. The constant headache of the previous week had been caused by a large abscess in my skull which had been pressing on a very thin wall of bone between it and my brain. Luckily for me, the abscess had pushed forward as it expanded causing the swelling in the eye. Had it gone in any other direction, he said, it’s likely I wouldn’t be here to tell the tale. As I looked at my surgeon in disbelief, I noticed that he looked totally exhausted and close to tears. Surely the news wasn’t all that bad? He then told me that he’d spent the whole night in the operating theatre trying to save the life of a close relative of his own who’d been knocked down by a hit and run driver. The young lad, very sadly, did not survive the night. This news cast a whole new light on our family situation. In time, I made a full recovery and so did my daughter. LoveBear, while looking a bit worn these days, still has pride of place. We were the lucky ones.


Life or Death

January 24, 2008

There’s been a lot of hype recently in Ireland about the appallingly inadequate hospital services for adult patients with cystic fibrosis (CF), and rightly so. Put simply, our Government’s failure to provide a dedicated CF unit in this country, is costing lives.

The critical issue here is the limited availability of suitable isolation facilities. For optimum management of cystic fibrosis, patients require isolation in individual en-suite rooms to prevent cross-infection occurring but CF patients are being denied this opportunity. Instead, these vulnerable patients must present themselves to A&E where they are exposed to high risk infections while they await admission to a hospital bed. They are then transferred to a mixed ward to be nursed alongside mainly geriatric patients with a variety of illnesses. This practice beggars belief. The high rate of MRSA infection in Ireland has done little to ease the plight of the CF population. Not only is MRSA a constant threat to immuno-compromised CF patients, it’s prevalence has meant that the extremely limited supply of isolation rooms have instead been prioritised for MRSA infected patients.

When I was first diagnosed with an MRSA infection following surgery, I was hurriedly moved out of a general ward into an en-suite isolation room to be barrier nursed while receiving intensive IV treatment. I felt like vermin and in reality, I represented a high risk to those patients whose immune systems are compromised by disease or treatment. I was eventually discharged home on oral antibiotics but the infection recurred and I was re-admitted through A&E for further IV treatment in a single isolation room. I was again allowed home on oral antibiotics but the infection worsened and I soon had to come back into the hospital. On this occasion I was transferred from A&E to the MRSA isolation unit where all patients with MRSA are nursed together. This unit was full of elderly patients, it was poorly ventilated and I felt distinctly uncomfortable with the high risk of cross-infection there. During my stay, I would spend the evenings sitting outside the door to the unit to get fresh air and to escape the blaring televisions. None of the staff ever objected to this practice. As my health improved, I soon ventured further afield to use the hospital coffee bar as a venue for meeting visitors. Nobody advised me otherwise and indeed, I often met doctors I knew while on my travels and they’d stop for a friendly chat. The point here is that as a carrier of MRSA, my outings put other patients at significant risk of cross-infection. This stark reality was brought home to me when listening to the recent public debate on CF issues. At the time, my only concern was self-preservation but now I realise that I should never have been allowed to wander the hospital corridors. If anyone is to blame, it is the hospital authorities for their slack policy of infection control.

Ireland has the highest incidence of CF in the world and yet we have the highest mortality rate and lowest life expectancy. CF patients have been waiting for more than a decade for a dedicated CF unit to be built and they are quite literally, sick waiting. Our Government has failed miserably in it’s duty of care to these young citizens. Lives are being shortened and young people are dying as a consequence of our inadequate hospital services. This really is a matter of life or death.