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Talk about a great idea! Macmillan Cancer Support is sponsoring CANCERTALK WEEK in the UK. Starting February 15th, folks are invited to share their thoughts. Using Twitter and Facebook, this cancer support group is going to get the ball rolling using a “word of the day”. The funniest responses will be shared. Cattywampus? Bumfuzzle? I’m pretty sure a lot of cancer patients will find creative ways to use these words:
http://www.facebook.com/#!/macmillancancer

On the surface, it seems rather lighthearted and fun, contrary to the seriousness of cancer and its effects on patients and their families. But the truth is that conversation shouldn’t always be heavy and dark. Cancer is a disease, but sometimes the journey is greater than the negative effects of cancer.

It’s important to look at cancer from many directions, even to have a chance to laugh about some of the more absurd experiences that arise during treatment. Laughter helps us cope. It also helps us bond. Having an opportunity to share with the entire cancer community is a good thing. Getting patients and their families to open up and speak their minds is more than just a chance to vent frustrations about cancer as a disease. It’s a chance for the world to learn more about how cancer patients and their families experience the disease. What works? What doesn’t work? What kind of support is helpful? What kind isn’t? What hurts? What helps?

Wherever you are, what ever your situation, if you have cancer or you love someone who does, why not check out the responses at Macmillan? Why not see if you can relate to the way UK cancer patients experience this disease?

If you’re hesitant to take the plunge, remember this. They are posting the funniest answers. If you’ve ever felt bumfuzzled by a doctor’s explanation of treatment, or you’ve ever found yourself cattywampused as you emerge from the dressing room after a medical exam, you owe it to yourself to fit a good chuckle into your day.

Speaking of cattywampused, my mom experienced this during radiation treatments. We would arrive for the appointments a little early. I wheeled her into the cancer center, big oxygen tank and purse in her lap. We navigated the long hallway maze to Radiology, where I would grab her a gown and take her to the dressing room. Once she was safely ensconced in the tiny cubicle, wheelchair and tank waiting outside, I would help her get dressed. She was so frail at that point in time, and the new dependence was very hard for her to accept. The only way I could cheer her up was to hum a little “stripper” tune as I removed each article of clothing. If I could get her laughing, I knew she’d be okay.

But the biggest cattywampus experience was the day my mom had her first treatment. She had unbuttoned her pants in anticipation of removing them, but the radiology technician told her it wasn’t necessary. Unfortunately, my mom forgot to re-button her pants. Wheeled into the treatment room, she was asked to stand up by Carl, the handsome, towering giant of a radiology student. Stand up, she did. The pants went down with the last remnants of my mother’s dignity. Unable to bend over to pick them up, she looked up at Carl and asked for a little help. Always the gentleman, Carl obliged. After that, he and my mother became good buddies. We learned about his mom, who worked in the UK and in Jamaica as a midwife, and whenever she came to the States for a visit, my mother was thrilled for Carl. He used to spot my mother across the waiting room when she came in for treatment, and he made a point of surprising her by popping up at her side unexpectedly. The world needs more Carls. He made cancer treatment more bearable for my mother.

FOR MORE INFORMATION, CHECK OUT MACMILLAN’S CANCERTALK WEEK PAGE ON FACEBOOK:
http://www.facebook.com/#!/event.php?eid=150785128311655

If a tree falls in the forest, and we are not there to witness it, does it make a sound?
What if a voice calls out from the wilderness that is cancer? Can we hear that?

I am often curious about my followers. Today, I read the tweets of one. Donna M., down in Florida, puts out little snippets of her life. What can I tell about her from these brief messages to the world? What can I know about her?

I know she is struggling with pain, with chemotherapy. I know it’s been tough for her. But I also know she is filled with a strong spirit. She’s trying to get through this battle without losing herself. She’s trying hard to rise above all those obstacles that cancer puts in her way.

I know there are days it’s impossible for her to get out of bed. And yet, she soldiers on. She gives it her best shot. Some days, she’s chilled to the bone and it’s hard to feel warm. This has been a tough winter for the South. Some days, she’s stuck in the waiting room at the doctor’s office for hours. We can all certainly relate to that, can’t we? I know Donna is a sports fan, keen on football and basketball (Miami Heat). I also know she treasures the good days when she can get outside and enjoy it.

In some ways, Donna M.’s tweets are a real learning tool. What role does spirit play in cancer treatment? So clearly, she is reaching out to the great, big universe, seeking peace, comfort, and kindness. In the midst of her own ordeal, she even offers a prayer for the people of Egypt.

Donna, I will probably never meet you, but thank you for reminding me of the real face of cancer. It’s not glamorous or glorious, this battle you fight. The days are not easy or kind. I will think of you from now on because I heard your voice cross the miles. You are real. You exist. And now other people know about you. We will all think of you, Donna M. in Florida. We will keep you in our prayers and wish you the best. When you face those dark nights and wonder how you can make it to the dawn, know this. The cancer community is there for you. Across the world, there are people who understand your struggle and we root for you, just like you root for the Miami Heat. Hang in there. Hold onto the good days, the good friends, the good memories. Wishing you blue skies, nothing but blue skies.

Every once in a while, it’s refreshing to find an individual with passion and compassion, who isn’t directly impacted by cancer, but who feels the need within to connect with the cancer community in a meaningful way.


Jill Trotta Calloway’s daughter, Katie, lost two friends to childhood cancer before she finished the fifth grade. How do you explain this kind of tragedy to a child? For Jill, childhood cancer was “the elephant in the room”, the subject that is hushed up and whispered about, but never really addressed. The limited number of children’s books on the subject frustrated Jill as a parent who wanted to help her child understand what had happened to these two little girls.


As a former social worker, Jill felt compelled to provide relevant information to children on childhood cancer. When you know from experience that education and support can make a difference, and you come across situations that expose these voids, it often provides the catalyst to propel you forward. In Jill’s case, “There’s an Elephant in My Room” was the result:
http://www.jilltrottacalloway.com/index.html


But Jill didn’t just write a book about childhood cancer. She donates all proceeds from the sale of the book to Striving for More Than a Cure:
http://www.striving4more.org/


Cancer touches so many lives. Families are often battered and beleaguered by its toll. By bringing understanding and compassion to those affected by childhood cancer and their expanded social circles, Jill Trotta Calloway offers others the chance to connect in a meaningful way.  Bravo!

Anyone who has ever worked with kids knows that cancer touches so many young lives. Some childhood cancers have a great cure rate. Others, not so much.

By the time most kids reach middle school, they will know someone who has cancer, and chances are good, it will be a peer.

That’s why getting kids involved in cancer charities is a good idea on many levels. First, it sends the message to kids that the community is willing to join together to save kids. Second, it tells kids that by joining a cause, they can make a difference as part of the community. But thirdly, and most importantly, getting kids to participate in cancer charities tells them that should they ever be diagnosed with cancer, there will be people who care about them and who want to support them.

The Roswell Park Cancer Institute is hosting a “How Big Is Your Heart” dance in Western New York, inviting students in grades 5-8 to a big night of music, dancing, food, and fun in support of pediatric cancer research and support programs:

http://giving.roswellpark.org/page.aspx?pid=1125

Many cancer charities aim their events at the adults who have the cash. The big galas and wine tastings are geared to adult tastes and interests. Having this dance for middle school children brings them into the fold, and that’s such a smart thing to do. These children will take their experience at the dance and build on that. They are more likely to reach out and to participate in future events.

But you know what’s really smart? While the kids are having fun in the ballroom, parents can have a special meal at the restaurant. Now that’s a night a parent can appreciate!

Liverpool may have given us the Beatles, but the Macmillan Cancer Center in London gave us The Nurses. This foursome is composed of Sharon, Andrea, Jo, and Gaynor, experienced head nurses who sing in between changing bandages and caring for patients.

There is something refreshing about four women who have dedicated themselves to caring for their patients and their families, who still find the joy and maybe more importantly, the hope, in the work they do. These women have seen a lot of life through some very intense experiences most people never know. Given the combined cardiac and midwifery experiences of all four, I guess you could say these nurses can really deliver a song with a lot of heart….

Music is such a powerful healing tool. Whether it’s rock and roll, classic jazz, old standards, doo-wa-diddy,or even a soulful ballad, we love music, all kinds of music. It’s the heart of the Party of Life. Can’t dance without music. Music gets our engines started — our feet tap, our fingers snap, and we start moving to the beat. The fact they have chosen the Macmillan Cancer Center as the charity to benefit from their efforts sends it over the top.

Singing nurses? Best of both worlds, really. They’re ready to cure what ails you, inside and out. You’ve got to love that!

If you want to learn more about The Nurses, check out their website:
http://www.thenursesofficial.com/home.htm

What are you doing April 29th this year? Why not join with other cancer survivors and get yourself to Stowe, Vermont for a weekend that inspires, educates, and celebrates the fight against cancer? It’s the 11th annual Stowe Weekend of Hope:
http://www.stowehope.org/index.html

Imagine having the chance to network with such a large group. These are people in various stages of cancer treatment and survival. It’s a chance to learn, to have fun, but above all else, to embrace life.

What can you look forward to if you go? The town opens its arms and its hotel rooms to you and your family. Complimentary lodging for first-time attendees. Gatherings geared towards providing you with information on specific kinds of cancer. Social opportunities to schmooze with other families touched by cancer. Fun and food. The event is free, supported by corporate and foundation donations.

Registration begins on March 1, so think about it. Start imagining what it would be like to just be yourself for a weekend and be with people who know what you’re going through because they’re going through it, too. It’s a chance to meet some mighty interesting people and network about a disease that affects too many people.

You can connect with Stowe Weekend of Hope on Facebook and Twitter. If the long winter has taken its toll on your psyche, a trip to Vermont might just lift your spirits!



My painting of The Reefs Resort, Bermuda

 Here’s a question for cancer patients — does your imagination affect how you see your cancer?

If so, can you use it in positive ways to improve your life and help you manage your cancer?

Artists train themselves in perspective, color, but more importantly, in the use of light.

If you look at some of the great artists, if you think about what you see, you realize that there is perspective of the subject painted, and color, too. But what usually stays with you most is the light. How does the sun fall on that field of snow, creating shadows? How does the moon affect the colors of the street cafe and the customers? Where does that apple get the gleam upon its colorful skin?

Light is often a mysterious, yet fascinating element. It directs our attention, and without it, we are left in the dark.

Where you focus your attention during cancer matters. If you see only darkness, you will miss the joy. If you only feel the loss that cancer brings to your life, you will never know the richness of the experience. You won’t see the love, the support, or the opportunities you still have, if all you see is a lack of future to come.

Living with cancer is all about understanding that you may not have another ten years, but neither may anyone else. It’s important to live for today and tomorrow and next week and next month. It’s important to get treated and to live as well as you can. If you embrace life with the same passion as an artist, you will create the moments that you can build upon. Make what you have matter more than what you don’t have. Find the beauty here and now and appreciate how it enriches your life. Gather these together, because they are precious. These are your pearls. Wear them in better health.

When my mother was diagnosed with heart disease, she learned she had to manage her illness. The damage to her heart was real, and even though some was reversed through treatment, she had to accept that her heart was going to be vulnerable from that point on. It never occurred to her that, short of a heart transplant, she could be cured. Her outlook was tempered by that reality.

A lot of cancer patients feel that anything less than a cure is a failure. While the ideal is to find a cure, sometimes learning to accept what cancer is and finding ways to manage it means you maximize your potential, instead of surrendering it to the power cancer has over you. You break through the fear and frustration of cancer and seek ways to live, so that your life has meaning.

Heart patients know that they have to pay attention to the signs their bodies exhibit, in order to get treatment when problems arise. Cancer is a disease that benefits from this approach. When you notice something is different, get it checked out. Don’t assume that a potentially new cancer means that your time is up. Some cancer patients take a fatalistic view of their cancer and assume the worst. But I’ve met many people who lived years with cancers popping up in different parts of their bodies, even Stage 4 patients. The secret is to manage the symptoms as they show up, without waiting, without hesitating. If you thought you had a blockage in an artery, you’d get it treated, wouldn’t you? Your cardiologist might order a stent or a bypass, to help the heart function better. Going to your oncologist to see what solutions are available when there is a problem is a smart thing to do. You’re looking for ways to survive the cancer.

Heart patients also know that lifestyle changes can often improve their survival rate. When they avoid harmful behavior, they help themselves to prevent new damage. Diet and exercise are critical in managing heart disease, but they can also help cancer patients. I say that as someone who sees some of the patients from the cancer center working out at my gym. One of the women, who was going through chemotherapy more than a year ago, is showing up regularly and looking healthy. Her hair has grown back and she’s hitting the exercise machines with some gusto. If you have the energy and your doctor’s approval, this is a great thing to do. Even getting out for regular walks can improve your mood and relieve stress.

Managing the stress of heart disease helps patients stay in the game of life because it reduces the wear and tear on the body. Cancer patients can also benefit from this. When you lie awake at night, fretting over your fate, that tension builds up in your body. It effects your blood pressure, your immune system, and your attitude. The more you can manage your stress, the better your outlook will be.

Stress is a very big part of cancer. It’s hard not to think about what is happening inside your body, to imagine the worst. Having healthy ways to take control of that stress is important for cancer patients. Stress can eat away at your resources and cut into your ability to manage your cancer.

Understanding your cancer and its effects is important. It’s also important to remember that sometimes cancer takes years before it shows up in tests. Not all cancers are aggressive. But even when they are, there are new treatments that can help you manage the disease, to give you time.
Time is the friend of cancer patients. With it, there is always hope for a better tomorrow.

It’s never too early for parents to start thinking about their kids and what they will be doing in summer. But if you’re a parent of a child with cancer, you know planning for the coming months isn’t an easy task. Where will your child be six months from now?

And what about adults with cancer? Do they have any options for summer fun?

There are many great organizations that offer camping experiences for kids and adults with cancer.

Hole-in-the-Wall Gang Camp is a wonderful place for kids with cancer and other serious illnesses ages 7-15. And they also offer family weekends for the cancer patient, siblings, and parents:
http://www.holeinthewallgang.org/page.aspx?pid=471

If you want a great list of cancer resources for kids, created by parents, try Pediatric Oncology Resources Center:
http://www.acor.org/ped-onc/index.html

They also have a very thorough list of cancer kids camps across the country:
http://www.acor.org/ped-onc/cfissues/camps.html

There are even day camps for kids with cancer, including Sunrise Day Camp, that works with children 3-16 during the day, but the children sleep at home:
http://www.sunrisedaycamp.org/

What is nice about some of these camps is they allow siblings to join cancer patients. That can be a nice bonding experience for the family.

Just don’t forget your other kids when you’re caught up in the cancer treatment puzzle. Sometimes it’s helpful to give them a break from the worry and wear of having a cancer patient in the family. If your other children have an interest in horseback riding or outdoor sports, consider giving them a little break for a week or two. They will come home with new energy and enthusiasm.

But what about adults with cancer? If you are a parent with cancer, or caring for a spouse with cancer, consider the benefits of sending the kids to summer camp, especially if there’s no chance you’ll be taking a “real vacation” this year. Many times when a loved one is in treatment, plans are put on hold because the physical limitations of the disease prevent the whole family from enjoying a trip. But also consider taking advantage of some of the offerings for families with a loved one.

The American Society of Clinical Oncology created a resource list for cancer patients and their families. Whether you want to go on a retreat or get together with the family, there are places you can go to have fun with people who understand what you are going through:
http://www.cancer.net/portal/site/patient/menuitem.169f5d85214941ccfd748f68ee37a01d/?vgnextoid=22f241eca8daa010VgnVCM100000ed730ad1RCRD

Whatever you do, don’t let cancer stop you from having some fun. Get out there and put a smile on your face. You deserve it!

I’ve met cancer patients who have felt like they were weak if they gave in to the effects of chemotherapy and took a nap. They would have their treatments and spend the next several days fighting the effects of the drugs coursing through their veins. My mother probably fought harder than anyone on this subject. The fatigue made her feel weak and submissive, not only to the cancer, but also to the side effects of cancer treatment. It was frustrating for her, until she learned some very important secrets about chemotherapy from some experienced cancer patients.

Many had multiple courses of cancer treatment and managed the disease several over years. These were my mentors in navigating the mysteries of cancer. These were the experienced veterans, battle-scarred, but knowledgeable about the secrets of surviving.

Almost every one of these patients swore by the power of a nap. In fact, many said that if they tried to fight the fatigue that often accompanies chemotherapy treatments, they wound up being even more exhausted. By accepting the reality of the effects of chemotherapy on the body, they were able to pull themselves back together sooner and get on with their lives.

Think about it. When you fight the fatigue, you are actually creating stress for your body. When you realize that it is not weakness on your part that causes the fatigue, but the medicine’s effects, you realize that you can actually conserve your energy by going with the flow. If you try to swim upstream, you’ll spend a lot of time fighting the currents. What will you have left when you’re done swimming?

One of the wisest veterans of cancer I met was a woman who had been Stage 4 for years. Her cancer had spread throughout her body, but every time it showed up, she would get treatment and go on with her life. And whenever she had chemotherapy, she would come home, put herself to bed when the fatigue hit, and her husband would take care of her until she was back on her feet. She understood that fighting fatigue wasn’t fighting the cancer. Living well was her goal, and she realized the importance of taking good care of herself.

Don’t be afraid to admit you need a nap now and then. Listen to your body and understand that when you take care of it, you have a better chance of managing your cancer and living longer. If you don’t believe me, ask some cancer veterans the next time you’re in for treatment. Not only can they give you some great advice, they will inspire you with their war stories and courage.