After hearing that someone you care about has pancreatic cancer, one of the first things you confront is the reality of statistics. But there are long-term survivors. They do exist - and often thrive. And their stories are important beacons of hope for others confronting this serious foe.
In her book, There's No Place Like Hope, "terminal" cancer survivor observes, "I have often thought of cancer as the schoolyard bully … the mere thought of him can send people running. But all it takes to diminish his power is for a couple of people to stand up to him. That's what a cancer success story does - it stares down the bully."
Such is the long operating principle of the Lorenzen Cancer Foundation and the Pancreatica resource. The aim from the outset has been to shine a hopeful and informational light at this disease. It is also the motivation of the Survivors page on this site. And, as the stories here will attest, it is the meaningful goal for these long-term survivors too, as they transform their private challenges into social good.
A choice from the outset was to let people self-define "long-term". This openness led to a wide array of people raising their hands as survivors, and has brought forth a diversity of success stories. The initial outreach went to a large online community of pancreatic cancer patients, caregivers, doctors and researchers, under the auspices of the Association of Cancer Online Resources (ACOR). As the invitation stipulated, "a long-term survivor is anyone who thinks they are."
It might be theorized that long-term survivors are also (chances are) those who "thought they would be." One of the many commonalities among the initial survivor families is a conviction, almost from the beginning, that they were going to beat the odds.
Due to the self-selective nature of those who feel moved to tell personal stories and why, there are often recurring themes. Multi-generational families tell stories to bequeath history and values to their children. Founders of organizations tell them to transmit their original visions in hopes that those will live on. Military veterans do so because they finally have enough distance from their wars that they feel ready to speak about them. Patterns always emerge. Threads intertwine.
For this particular series, we wanted (primarily) to help people share the details of their exceptional medical journeys. We know what clinical factors make pancreatic cancer survival more likely: overall age and good health, early diagnosis, tumor location, eligibility for surgery, world-class hospitals, skilled doctors. Most (but not all) of our initial interviewees had many (but not all) of those things going for them. But so do many people who still aren't so lucky. We wondered whether there were also other, non-medical situations or attributes that these long-term survivors would turn out to have in common.
There were. And they're not news bulletins. But they do leap off the page as you read these stories. Positivity. Indomitability. Spirituality. Appreciation of the little things. A craving for information. Continuing things they love doing. Not taking no for an answer. Strong, devoted and ever-present caregivers. Hope in the face of (what often seems) no hope. And humor, always humor. One survivor has had this magnet on his refrigerator since the very beginning: I plan to live forever. So far, so good.
And even now - when it seems that the hard part may be over, and the coast clear:
All have an impassioned, downright mission-driven determination to share their experience with people who are taking this journey after them. To continue helping others.
And - they share a certain thankfulness for the experience they've been through. As one wife and caregiver put it, "there was a special sweetness and richness about that time, as we were forced to focus only on each other for a change, and to talk and reflect about what really mattered."
In many cultures, stories have been told out loud and handed down for centuries, from one generation to the next, in order to communicate and preserve the significant. In the telling of those stories, there is respect and honor accorded to those who speak. For those who listen, there is an implied stewardship... the responsibility to receive, embrace, respond, learn, and pass on what they've heard.
We hope you'll feel that too, in these tales - whether you have your own connection to pancreatic cancer, or just want to be inspired and humbled - and reminded - about the insignificance of most of our daily problems. And about the triumph of the human spirit.
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Like all major hurdles in life this disease can bring families closer together and make marriages stronger. It can also wreck relationships and hurtle seemingly solid couples onto the rocks.
ReplyDeleteFear, anger, ignorance, lack of communication and an overwhelming sense of helplessness are all common culprits in undermining relationships tested to their limits by a breast cancer diagnosis.
It’s important to remember that no matter how violent, confusing or bewildering your feelings are, you can bet your bottom dollar there are thousands of others out there feeling exactly the same. This applies equally to breast cancer sufferers themselves as to their loved ones.
So if you find the disease is putting an intolerable strain on an important relationship, don’t suffer alone – you’ll find plenty of support from professionals and other individuals in the same boat who understand exactly what you’re going through. You may well find that talking about the problem goes a long way towards solving it, especially if you can chat with others who have been in the same situation.
Internet forums and chat rooms are an ideal place to reach out to people who’ll understand what you’re going through. If they can’t offer practical advice at least they can provide a comforting cyber shoulder to cry on and assure you that you’re not alone.
Many hospitals these days offer excellent support centres, some geared specifically to the needs of partners and close family relatives of breast cancer patients. Some are doing pioneering work with young children whose mothers have been diagnosed with the disease. For example there are child-orientated support centres which bring youngsters together to deal with their anxieties through art and play in a very non-threatening environment with specially trained therapists present.
In the UK there’s the highly regarded Macmillan nurse service which provides free support for patients and their families both in hospital and at home. All Macmillan nurses are experienced registered nurses trained in cancer care, pain management and psychological support. You can visit their web site here: http://www.macmillan.org.uk
No-one knows what effect this disease will have on their closest relationships. Some men have been devastated when their wives of many years have reacted to their breast diagnosis by demanding a separation or divorce. There are women who have been truly amazed at the previously unknown levels of tenderness, love and support shown to them by their partners throughout the traumas of a mastectomy and punishing follow-up treatment.
Mothers have been gutted when teenage sons have refused to discuss their illness and even seemed unconcerned about it. Some people find their oldest and dearest friends desert them in their hour of need whilst new friendships appear in the unlikeliest of places.
There are sufferers who need to talk openly about their disease and treatment whilst others prefer to avoid the subject whenever possible. Relatives and friends equally have different ways of dealing with their own fears and anxieties.
Whichever way you find yourself reacting to this situation and no matter how isolated you may feel don’t be afraid to ask for support. There are plenty of people out there who are ready and willing to offer it.