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.

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.

A Lifeline

March 17, 2008

a-lifeline.jpgAnyone who’s ever read a book they can’t put down, will know exactly what I mean by compulsive reading. The story draws you in and you find yourself totally captivated until the last page is reached. Well, last night I found myself in exactly the same situation only on this occasion it wasn’t a book I was reading. It was blog and it’s stunning!

On looking through my blog stats, I noticed several visits from a referrer called Distant Rambler. I didn’t recognise this name and on investigating further, I couldn’t believe my luck at the blog I’d found. It’s beautifully written, very moving and is totally spell-binding. I can honestly say that of all the blogs I’ve ever read about patients and their medical stories, this one stands out way above the rest.

This inspirational blog is written by Laura, a 28 year old with a PhD, who is presently in hospital undergoing treatment for ALM, an acute form of leukaemia. It is in effect, cancer of the blood. This is not Laura’s first time tackling ALM as she was first diagnosed with leukaemia when aged just 12 years. Her cancer recurred last year but this time she has also had to battle a tumour on her back. She spent her birthday in isolation and also missed out on a family wedding. It takes pure grit and determination to achieve a PhD and these qualities shine through in her approach to her illness. Laura has recently undergone a bone marrow transplant (BMT) and is presently back in isolation, counting down the days until her release. She writes her blog like a diary, detailing all the daily ups and downs of her journey with cancer. Her story is written with such clarity and honesty, it’s quite breath-taking. Put simply, Laura’s life is on the line. She has spent a great deal of time in hospital undergoing intensive chemotherapy and despite suffering many setbacks along the way, she still manages to find humour in her situation. I love her writing – Laura does not beat about the bush, she gives it to you as it is. She is incredibly brave in the face of adversity and deserves huge admiration.

Today is Day 17 post-transplant for Laura – she received her third bone marrow transplant on 29/02/08 and has spent the last 17 days in complete isolation. Today is also St. Patrick’s Day, a day when Irish citizens are celebrating around the world. Laura is too ill to celebrate but through her blog, she still managed to wish everyone else a happy day. Her laptop is her lifeline, her contact with the outside world. Her blog provides her with a welcome breathing space from her illness and continuing treatment. Laura is feeling very low at the moment. Please, could I ask you to drop by her blog and let her know that you are thinking of her. You will be, quite literally, throwing her a lifeline.

I hope tomorrow is a better day, Laura.

Another Year Waiting

February 25, 2008

With Ireland’s entry for the Eurovision song contest featuring in the news today, I found myself humming along to the tune of “What’s Another Year?”, Johnny Logan’s winning entry in 1980. Those were the days when we were told to tighten our belts while those in power were quite literally feeding off our taxes. Our health service was starved of funds at a time when it’s infrastructure required huge investment to meet with the demands of a rapidly expanding population. Hospitals wards were closed down causing delays throughout the system. Our present crumbling health service is testament to the government neglect of that era. Today’s waiting lists have escalated to the point where people are dying while they await treatment. The lyrics of the song below are very poignant when you consider the number of people suffering as they wait to see a specialist, in order to access crucial treatment.

I’ve been waiting such a long time,
looking out for you
But you’re not here
What’s another year?

I’ve been praying such a long time
It’s the only way to hide the fear
What’s another year?

I’ve been crying such a long time
With such a lot of pain in every tear

What’s another year? What’s another Y-E-A-R?

Susie Long sadly wasn’t able to wait another year. Her premature death from bowel cancer last October, was directly attributable to a long delay on a waiting list. By the time her diagnosis was made, it was already too late. Susie bravely used her own plight to highlight the inadequacies in the public health system. She succeeded in mobilising the country into thinking about where we are going as a society. I still feel outraged for the way our health service failed her. Yesterday should have been Susie’s 42nd birthday.

We’ve waited for long enough. It’s time for our Minister for Health to get off the stage. She gets “Nil Pointe” from me. And by the way, Dustin gets my vote for Taoiseach!

Susie Long R.I.P.

October 15, 2007

I listened with profound sadness to news on the radio this morning that Susie Long (41) from Callan, Co. Kilkenny had died over the weekend. Susie was a brave, intelligent, articulate woman who was not afraid to speak out about the inequities in our health service today. She believed in social justice and was totally against the need for private health insurance and a 2-tier healthcare system. She was diagnosed with terminal bowel cancer in March 2006 having waited 7 months (following referral by her GP) for screening in the public health service. By the time she received her initial diagnosis it was already too late – her cancer was classified as terminal. Susie wrote an email to ‘Liveline’ in January this year to express her anger at the delays in the service. She used the pseudonym of ‘Rosie’ to protect her family from unwanted attention. Her subsequent interview with Joe Duffy on his radio programme ‘Liveline’ was incredibly moving and touched many people’s hearts. It was hugely successful in highlighting the failures in our health service and certainly did not go unnoticed by our Minister for Health. Susie spoke with great dignity and achieved more in that interview than most patient lobby groups could ever hope to achieve.

The important point here is that Susie was badly let-down by our healthcare system. Our government should hang their heads in shame for allowing the health service to deteriorate to the point where it fails patients. Susie advocated on behalf of all patients to bring about change in the system which had failed her. Her husband and children must be very proud of her – we all should be. One thing is certain, Susie will never be forgotten.

Susie was concerned that she may not have done enough to make a difference. She MADE A HUGE DIFFERENCE! Rest in peace, Susie.