LC Whole Patient Support Archives

Lung cancer can unleash a whirlwind of unexpected emotions and experiences for patients and care partners. You are more than just a patient; more than just a treatment plan.

Whether your concerns are physical, emotional, nutritional, or spiritual, we can help.

More resources for Lung Cancer Whole Patient Support from Patient Empowerment Network.

8 Beliefs That Can Hold Caregivers Back (from reaching out for help)

Family caregivers too often suffer from two very common things: overwhelm and isolation. Or, to it put another way, exhaustion and loneliness. So often, the nature of illness and trauma not only disrupts our normal ways of living, but also disrupts our connections with people who care about us. Caregivers who reach out for support gain the benefits of lessening their burdens and of feeling the warmth provided by people who care.

Too often, caregivers hold back from reaching out because of beliefs they have about doing so:

  •  Nobody else can do what I do for my loved one.
  •  My loved one won’t accept help from anyone but me.
  •  I’m too busy to even begin to think about doing anything more – even reaching out.
  •  The moment I start reaching out, our family will lose our privacy.
  •  I’m afraid of imposing on people.
  •  Reaching out shows weakness; doing it yourself shows strength.
  •  I’m afraid that nobody will come forward to help me.
  •  Since I’m able to handle things now, I’ll be able to continue to do so.

These, beliefs, while completely understandable and very common, are neither healthy for you as a caregiver or for your loved one. They get in the way of your resilience and your capacity to sustain yourself for however long your caregiving is required. Each week, I will be focusing in on one of these self-limiting beliefs and invite you to come along with me in exploring those that you are now willing to let go of and change into ones that help you not only survive, but thrive.

So let’s get started:

Nobody else can do what I do for my loved one

Think of the whole range of “things” you are currently doing. First think of the practical ones: dressing, managing and administering the meds, shopping, preparing, serving and cleaning up after meals, assisting with bathing and toileting, and so on. Now focus on the emotional and spiritual ones – showing love, being a trusted confidant, giving emotional support and comfort, etc.

Nobody else can do these things exactly how you’re doing them or would your loved one experience them in the same way if they were done by people other than you. No one else is so attuned to your loved one’s needs and preferences and, most likely, your loved one is most receptive to your way of doing these things. And, no one else would be as committed to your loved one’s comfort and be as vigilant as you are. This much is true.

But, the trap here is believing that, since no one else can do things the way you do, that no one else can do them or do them satisfactorily for you and your loved one.

Let’s take a look at some of those practical things that I listed above. Take one area for starters, e.g. grocery shopping. These days, it’s not like the days when our mothers used to look the butcher in the eye and tell him she wants a better cut of meat than the way he did it last week. Shopping simply means meal planning, list making and going out and getting the groceries – all very delegatable tasks. When you think about, I think you’ll agree that many if not most of the practical things can be done by others. Not necessarily with your intimate knowledge and way of doing things, but in their own ways. And, similarly, other people will bring their own and distinctly different ways of providing emotional and spiritual support as well.

Bottom line: Is this a belief you’ve been holding? If so, how does it serve you? How does it hinder you? How might you re-write that belief so that it serves you better? For example, “There are some things that other people can help with. I’m going to try this out with some simple things.” What practical step can you take to try out that new belief this very week? Let us know – by commenting on this blog. You’ll help yourself and other caregivers by doing so.

 

 

 

 

 

Twitter Tips and Resources for Cancer Patients

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The “Twitterverse” is pretty mainstream now and not just for the younger generations any more. Of the many, many uses for twitter, cancer information, education and support are gaining ground. Twitter is fast, easy, mobile and instantly gratifying.  Information literally at your fingertips.

Several articles have been published on the increased use of twitter by cancer patients, from cancer patients tweeting through chemo, “power” cancer patient tweeters in Japan, and a controversial article in ASCO about a breast cancer patient tweeting about her disease.

Tweeting is easy. Set up an account and go! If you are interested in getting some good information back from Twitter though, you should choose carefully whom to follow.

All news sources are on Twitter, so it’s easy to find them and follow them.  All top cancer medical centers are on Twitter and they are a great source of information on cancer research, news, clinical studies and basic medical information. Here a just a few to start with:

@MDAndersonNews

@DanaFarber

@SeattleCCA

@MayoClinic

@MoffittNews

@LurieCancer

Patient support groups for cancer patients are numerous and you can usually find one that is specific to your illness. Again, here are some to start with:

@StupidCancer – mainly for young cancer patients

@ImermanAngels

@MyelomaCrowd

@MyelomaTeacher

@MyBCTeam – for breast cancer survivors

@CancerSupportCM

@PCFNews – Prostate Care Foundation

@PanCan – Pancreatic Cancer Action Network

There are many, many more – this is just a small sampling. To find specific groups or people to follow, you should use the search engine on Twitter or do a hashtag search and see what comes up. For instance, if you are interested in following groups or people that tweet about stomach cancer, do a search and research their profiles. For instance, I just searched “stomach cancer” and this is what came up:

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You can now go to these twitter profiles and see if these are some people that you would be interested in following.

And if I do a hashtag search for #stomachcancer, I find this:

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So you can go to these twitter profiles and see if any of them appeal to you.

It’s quite simple and you can follow some groups and people for a while and then “unfollow” them if their tweets are not what you were looking for. Once you follow people or groups that you know have the same interests as you, you can use them as your “news stream” and tailor your stream to the kind of information that is most suited to you.

Twitter is easy, quick and gets to the point right away (it has to – with only 240 characters allowed by tweet!) It’s a great way to keep informed and have custom-made information at your fingertips.

Living Well with Cancer

I would bet that most, if not all cancer patients understand how important it is to maintain a healthy lifestyle while living with the disease. However, I feel that living well is so important for everyone that I wanted to touch on some key points and point out some cool resources that can help maintain an active and healthy life.

MD Anderson points out why a healthy lifestyle is important for cancer survivors:

“A healthy lifestyle is important after cancer treatment. Good nutrition and regular exercise can:

  • Reduce your risk of cancer (new or recurrence)
  • Help relieve long-term side effects of treatment
  • Lessen feelings of sadness and improve mood
  • Improve your heart and lung health and lower the risk of heart disease
  • Help lose or maintain weight
  • Increase energy, endurance, strength and flexibility
  • Lessen the effects of stress, anxiety and fatigue
  • Help maintain normal bowel function”

MD Anderson goes on to offer tips on healthy eating such as avoiding red meat, limiting sugar, salt, processed foods and alcohol intake (the resveratrol in wine may not be the wonder ingredient it was thought to be), and eating lots of plant-based foods such as fruits and vegetables.

Besides eating well, be sure to practice regular exercise, including aerobic activity and muscle strengthening activity.

Some people have no problem following this regimen. Others find it difficult to motivate themselves. Below are some tips and hints that may be useful:

Healthy Eating

It’s Spring! Visit a Farmers Market in your area. This time of year, these markets are so colorful, brimming with fresh fruits and vegetables.

Local farmers market in Charlottesville, Virginia

Local farmers market in Charlottesville, Virginivegetables. And many local newspapers or magazines offer great recipes for local crops. Plan on eating just vegetables for lunch a couple of days a week; you really may enjoy it!

Join a local food co-op. These are more and more popular. Local farmers will deliver seasonal crops to a central location or even deliver them to your home. Plan your meals around the crops and look for recipes including them, rather than choosing a recipe and then purchasing the ingredients. With online search engines, finding recipes takes seconds – include the term healthy in your search.

Join a healthy eating group, or healthy cooking group. Start an herb garden to make your vegetables all the more tasty. Experiment with spices and ethnic recipes. Grind and toast your own spices.

Join Pinterest and check out all the tasty, healthy recipes there. Create your own board and pin some of your favorites. Cleveland Clinic has a wonderful Facebook page with healthy eating tips and healthy lifestyle tips. “Like” their page and get their updates daily.

Currently, UC Davis Comprehensive Cancer Center researchers are doing a clinical trial on how diet affects cancer patients. In the Sacramento Bee,  Dr Edwin Alvarez, a gynecological cancer specialist there is quoted as saying,

“Whole lifestyle changes including diet may have something to do with patient recovery. We’re participating in a clinical trial right now addressing this question. If they overhaul their diet, do they do better? Right now, we don’t know the answer.”

There is also a cookbook out entitled, The Ultimate Anti-Cancer Cookbook by Pamela Braun. I have not read it so can not offer a review but in the same article as above, Dr Edwin Alvarez comments about it in regards to diet, nutrition and cancer,

“… research is certainly indicating that good diet has a strong influence on (reducing) cancer risk,” he added. “That’s part of the message (in Braun’s book) that I can underline.”

Diet and exercise are part of the recovery process for every patient, Alvarez noted. “It’s easy enough to say, ‘Eat better.’ But the patient then asks, ‘How?’ That can be tough to really address while also treating the cancer adequately.”

Staying Active

Staying active is key to keeping healthy and aging gracefully. Aerobic exercise, muscle strengthening, balance and flexibility exercises will all keep your body healthy and fit. Yoga is wonderful for flexibility, balance and strength. Abdominal exercises will help strengthen your back to guard against lower back pain, one of the most common medical conditions. Brisk walking is great to build aerobic strength.

But exercise takes motivation and this is difficult for many. How to get motivated? Here are some ideas:

Exercise with a friend. If you have a partner, it’s easier to stay motivated and more difficult to back out.

I am a puppy raiser for Service Dogs of Virginia. I am here with my current "student", Bolo

I am a puppy raiser for Service Dogs of Virginia. I am here with my current “student”, Bolo

If you have a dog, walk with your dog; they are great walking companions. If you don’t have a dog, consider volunteering at a local SPCA and walk the dogs there. Or volunteer at a local service dog organization and take these wonderful animals on outings to the local supermarkets and shopping malls. You may be surprised at all the people you meet while walking dogs. It is a great way to get out, stay active and meet new people.

Use a gadget! Get a Fitbit or a BodyMediaFit. These devices track everything from calorie intake to steps taken, sleep patterns and periods of exercise then sort and analyse the data to give you organized charts on your mobile phone. Track your steps on these devices or just get a simple pedometer and track steps on that. See how many steps you take a day and try to improve on that number.

Watch some yoga YouTube videos. Find out what kind of yoga is good for you and start stretching. Start slow. Join a local healthclub or yoga studio for personalized help.

The key to getting and staying motivated to exercise is to find the activity that is best for YOU. But do something! You owe it to your body and to your mind.

Healthy living, including healthy eating and staying active is important for everyone. But for anyone who has a chronic disease, it is critical. Please, Empower yourself and take care of yourself and your health!

 

How Chronic Cancer Patients Use Social Media to Stay Informed

New research and treatment has made many cancers that were previously terminal now chronic. Patients live with the condition and daily go about their lives. But often, they do have to manage their cancer and often they worry about reoccurrence, side effects from medication and progression of the disease.

The chronic patient is often “forgotten”.  They are under treatment, doing (fairly) well, and doctors and the media are focusing on the more urgent issue of treating the acute or advanced cancer patient.

Chronic cancer patients want to know and understand their disease.  They would like a cure and they seek out the newest and latest information online looking for answers on treatment options, and how to best live with their disease.

Where can chronic cancer patients go for help online?

There are numerous sites for help with living with chronic cancer.  Many are disease-specific, offering news about new treatments or research.  There are several good video channels that offer interviews with cancer specialists about treatments, clinical trials or other information on specific cancers.  There are patient support networks and numerous Facebook pages that offer patients the opportunity to connect with other patients and post discussions about all aspects of their disease.

There is an overwhelming amount of information online and often, it is difficult to sift through all of it.

I have listed a few of these sites below.  In no way is this a comprehensive list, but I have asked several cancer patients and opinion leaders for their input and have added their thoughts to the list.

Resources for Chronic Cancer Patients

Cancer.gov

CLL Global

Patient Power

CanCare

Oncology Tube

National CML Society

Leukemia Lymphoma Society

Patients Against Lymphoma

CLL Topics

Institute for Myeloma and Bone Cancer Research

The Myeloma Crowd

International Myeloma Foundation

 

Facebook groups

Essential Thrombocythemia

Myeloproliferative Neoplasms

Polycythemia Vera & Budd-chiari Syndrome Awareness

 MPN Forum

Myeloproliferative Neoplasms 

 

Patient Opinion Leaders and Advocates

Another great way to obtain information on chronic cancers is to follow patient opinion leaders (POLs) on social media channels.  These patients have been living with their specific cancer (or cancers) for some time and have spoken about their experience (often publically), written books and articles about it, formed groups or even organizations or companies around chronic cancer.  They have Facebook pages, tweetchats, blogs, video programs and websites.  They organize patient meetings, interviews with physician specialists and events around their illness.  They have the experience and know-how to conduct excellent informational programs for other patients; they are a wonderful source of information.

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Andrew Schorr, @Andrew Schorr, founder of PatientPower and author of the Web Savvy Patient has been in remission from Chronic Lymphocytic Leukemia since 2001.  In 2012, he was diagnosed with a second cancer, myelofibrosis.  Andrew now leads a normal life, thanks to a new targeted oral therapy.  He has been a leader in patient education since 1984 and is considered to be one of the most respected and reputable Patient Opinion Leaders.

When I asked Andrew why he did what he did, he responded,

“I feel a responsibility to try to help other patients do better because of something I’ve learned through my experience. While others might wish to protect their privacy I “go public” with the hope to ease the journey of other cancer patients like myself. It helps me feel I am doing something significant and helps all of us know we are not alone, but rather a real community.”

Patient Advocates also help other patients by coaching them through living well and coping with their disease.  They use social media to spread the word about their illness and educate patients around the world.

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I also spoke with Cindy Chmielewski, @MyelomaTeacher, a former elementary school teacher and a multiple myeloma patient that is now a patient advocate for the disease.  Cindy is on the Board of Directors of the Philadelphia Multiple Myeloma Support where she is in charge of the Patient Education Library and Patient Advocacy. – She speaks at support groups, tweets about myeloma, and participates in several online support communities.

When asked why she did what she did, Cindy answered,

“Everyone needs a purpose in life.  Being a teacher for 28 years before my medical retirement I knew my purpose in life was to be a facilitator of information. When I regained my strength after my Stem Cell Transplant opportunities began to fall into my lap. I had some very good mentors when I was newly diagnosed. I am very grateful that I able to pay it forward. Sharing what I learn gives my cancer experience a purpose. Using social media allows me to reach a larger audience.  I am still a teacher, but now I teach a new subject with different students. We are all in this together and we can gain strength from one another. My life once again has meaning”. 

The Power of Social Media

Social media has drastically changed the idea of patient empowerment. Patients all over the world can connect, educate themselves and their family members, network, and instruct and educate others. And they are doing just that. The day of the passive patient is over: Welcome, empowered patient!

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Patient Power!

This post was originally published on HealthWorks Collective