What does “palliative care” feel like?

It’s hard to imagine what a palliative care environment is like unless your family has experienced a loved one dying in one.

Almost eleven years ago, my 89 year old mother was dying of lung cancer. Fortunately, the almost five-year course of the disease had left her mostly symptom- and pain-free. But, about a month before she died, my mom suffered a nasty fall. After a day or so of hospital tests her (very wise) physician told us, “the disease has spread to her brain; there’s nothing more we can do. I suggest we transfer her to hospice.”

Startling, but not unexpected, news.

We talked with my mother about the transfer. She was calm and knew it was for the best.

I don’t remember what I was expecting when we accompanied my mother to the hospice facility, but it certainly wasn’t the kind of vibrant atmosphere we found there.

After all, death is supposed to be solemn and foreboding.

But not here. Here, families were sitting in a spacious greatroom, watching TV, playing games and laughing. There were kids around. The staff was upbeat and engaging.

We were shown to my mother’s room and encouraged to visit any time, day or night. A staff nurse reassured us [...] continue the story

Cancer Can’t LOVE Like This

Cancer Survivor: Daniel Stolfi Diagnosis: Non-Hodgkin’s lymphoma Date of Treatment – March 2008-March 2010 Relation: Girlfriend

I don’t know how to put this. Long story short – I found out Daniel was sick a month into his treatment. I was devastated. It took me days to call him and then I finally manned up to it. Once we talked, our relationship blossomed over time. Dan and I know each other from theatre school (2002). Daniel’s illness shook our group of friends from University greatly. All were incredibly supportive and loving, but there was something inside my heart that wanted to be by his side. To this day, I have no idea what it was, but now he’s my love and I’m so blessed to have him – everyday.

I spent two years being a part of something very scary, sad and painful. It was hard to watch someone be so sick. I felt helpless and unsure of what to do at times. I questioned his illness, I cried a lot, I was frustrated, and I wanted answers. It brings tears to my eyes to remember how hard it was to know that I couldn’t really do anything to take the pain away.

 

Then, I finally realized [...] continue the story

How Patrick Swayze died: Why we should care

By Barron H. Lerner, MD

When I finished my book on famous patients, the most common question I received was “Are the stories of sick celebrities really relevant to other patients?” My answer was that yes, with some caveats, these experiences are well-worth knowing.

The same can be said for the story of Patrick Swayze’s terminal pancreatic cancer, which has now been told by his widow, actress Lisa Niemi Swayze, in a new book, “Worth Fighting For: Love, Loss and Moving Forward.” Patrick Swayze, a dancer and actor best known for his roles in the films “Dirty Dancing” and “Ghost,” was diagnosed in January 2008 and died of the disease in September 2009 at the age of 57. He was originally told he would live only a few months.

First, the caveats. Like most celebrities, Swayze had the means, as his wife says, to “think outside the box.” He enrolled in a clinical trial at Stanford University, traveling regularly to Palo Alto from Los Angeles for experimental chemotherapy. Swayze also was a VIP patient, getting first-class attention from top doctors and hospital staffs. Most patients experience greater hurdles.

Nor should pancreatic cancer patients who read “Worth Fighting For” assume that they, like Swayze, can [...] continue the story

ArtAids Foundation present You Are Not Alone

The Fundació Joan Miró, the Museo de Arte Contemporànea, Vigo (MARCO) and the ArtAids Foundation present You Are Not Alone, an exhibition curated by Hilde Teerlinck, director of FRAC Nord-Pas de Calais/Dunkerque and Irene Aristizábal. The exhibition has the support and involves the collaboration of Mr Han Nefkens and is sponsored by Fundació Banc Sabadell.

You are not alone was intended to prompt reflection on the discrimination and stigmatisation to which, even today, AIDS sufferers are subject. Although medical advances have increased the expectancy and quality of life of sufferers, at least in the developed world, this progress has not been reflected in a reduction in the social rejection they experience.

In You are not alone, 14 artists from around the world helped to fight stigmatisation by reappraising the causes, consequences and current context of Aids as well as the ways of fighting it.

The ArtAids Foundation had produced works specifically designed for the exhibition by nine internationally acclaimed artists whose work does not generally approach the subject of Aids. The selected artists were: Deimantas Narkevicius (Lithuania), Latifa Echakhck (Morocco), Danh Vo (Denmark/Vietnam), Christodoulos Panayiotou (Cyprus), Lorena Zilleruelo (Chile), Lucy & Jorge Orta (UK and Argentina), Antoni Miralda (Spain) and Elmgreen & Dragset [...] continue the story

Sleep – Is It Overrated or Am I Just Stubborn?

By Soania Mathur

Well here I am, 3:40 AM, up and out of the warmth of my bed – yet again. It’s been years of sleep issues of every sort. Sometimes it’s initial insomnia where I’ve spent countless hours staring into the darkness, reading into every shadow, tossing and turning, trying to find a comfortable position, trying not to wake my husband, trying not to look at the clock which seems to mock my difficulty. Other nights I do fall asleep, either because I haven’t truly slept in literally days or because I’ve given in and actually taken yet another pill, this one designed to make me sleep for a few precious hours. I don’t often do this, mostly due to my own stubbornness, the desire to will my body to do what it’s supposed to do without the need for something outside of me to do the job. This obstinate stand usually frustrates my husband and my oldest daughter whose plea “Mama, what’s one more pill especially if it helps?” makes complete logical sense. Yet to me that one little pill (or the three it takes now) represents yet another way this disease has taken away my ability to control [...] continue the story

Speech to World Parkinson’s Congress

Thank you Dr Lees for that kind introduction.

Good evening Ladies and Gentlemen.

I am truly honoured to have been given the opportunity to address this the Second World Parkinson Congress.

As you know the patient address at the First Congress was delivered by Michael J Fox.

I have been a fan of Michael’s since I was a teenager.

One of my first trips to the cinema was with my sister Christine to see “Back to the Future” . I thought it was a fantastic film.

As we left the cinema I said two things to Christine. The first I have no problem with.

I said: “Michael J Fox is so cool.”

The second statement I am now not so sure about. I said:  “I wish I was just like him”.

Four years on from the first Congress I am delighted to welcome you to Scotland. Many of you are new to Glasgow and I am sure you will enjoy your stay in this wonderful city.

Glasgow is known throughout the world as a city of culture, as a city of invention and industry, and as you will discover, a city inhabited by colourful, humorous and optimistic characters.

For me Glasgow is a great place to have Parkinson’s.

It is also the [...] continue the story

Bryn: Diagnosis

The question I am most often asked is “how did my Parkinson’s disease start?”

This is my first blog entry, telling the story of the year from first noticing something was wrong and getting the diagnosis of Parkinson’s disease. It started towards the end of 2006, there was a tremble in my right arm which caused some irritation when trying to use a mouse, pressing the wrong button, deleting entire paragraphs, that sort of thing. I booked an appointment with a locum at the local surgery and he did some tests and came to the conclusion it was nothing to worry about.

Months went by and the tremble got slightly worse and started in a minor way in my right leg; additionally there was some pain in the arm. People at work noticed and told me to ‘Sort it!’ so I booked into see my regular GP in July 2007. The GP saw something.

She held a finger up and I had to reach out from my nose and touch her finger with my right hand. My arm wavered as it travelled to her. This raised a suspicion in her mind and she decided to refer me to a neurologist. In addition she referred me [...] continue the story

I Let Her Die: A Story of Suicide by Starvation

What does it mean to be a human being? What does it mean to live a dignified life? Should the two not go together? When a person no longer has any real awareness of her existence, no recognition of previously loved friends and family, no control over body functions, no ability to feed herself, is this a dignified life? Is this a human existence? How much worse the situation must be to a person who exhibits all of the above losses, but who still retains enough lucidity to understand the situation. Living must be a torment, a “hell” on earth, except to those who still retain a belief in a “heaven” after death. To someone like that, the only control left, is over food. Whether to eat and live, or refuse to live, and die. Suicide by starvation. I was faced with just that situation.

I let her die. When my aunt was admitted to a nursing home, she weighed about ninety pounds, and was hardly eating. The team of doctors, nurses, social workers, psychiatrists, suggested a feeding tube. They were shocked by my immediate refusal, as they felt it was the only way to keep her alive. I was the [...] continue the story

An Account of Frustration with the System

Late last year, at the age of 51, I got sick for the first time ever. My family doctor couldn’t figure out what was wrong with me, so she told me to go to the ER. I resisted this for several weeks because I hadn’t been shot or anything. We should not be delivering primary health care via the ER – it’s much too expensive! After about two months, without any other options offered by my family doctor, I finally realized that if I was going to get any help I had no choice but to present in ER, even though it wasn’t a life threatening situation. I wasn’t even in any pain at that juncture.

I spent about 4 hours in the ER of the hospital where I work (as a social worker) and was treated quickly and with dignity – in no small part because I am on staff. I was told, in so many words, that there aren’t many “perks” in our field, but that when we get sick, we will be cared for. I thought this was a bit unfair towards people who don’t happen to work in a hospital. This was pretty much the end [...] continue the story

My Rise From Near-Self Destruction

To be or not, as Shakespeare said, or to live or not to live. That was the question which plagued me. I was now seventy-seven years old. Did I want to live into my very senior years, given that I had developed neuropathy which was hampering my ability to walk and causing me great pain? Then, a further question appeared; would it take more courage to commit suicide, and avoid the painful future which would include a lessening of my faculties, both physical and intellectual, and would include requiring someone to look after me, or to choose to live, and accept the years and changes to come, as a challenge?

I had always been healthy, strong, and independent. Thus the concept of not walking, and needing someone to look after my daily needs was an anathema to me. The neuropathy had probably been developing over many years, as I can now recall getting tired faster, and not being able to walk as far. Also there appeared a numbness and tingling sensation in my legs, along with pain up my legs and into my back. As well, the tingling had begun in my fingertips. So now fear really set in. How long [...] continue the story