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About this blog

 I am a survivor, caregiver, writer, patient navigator, founder of Lung Cancer Support Community (LCSC), Breathe Deep DFW, Dallas Fort Worth's first 5K walk/run benefiting lung cancer research and the Vice President of Support and Survivorship Programs for LUNGevity Foundation. 
**The thoughts expressed on this blog are my own and do not reflect those of the Foundation.

Entries in this blog

 

Don't Help Me. Please Help Me.

Don't help me. I am a fiercely independant woman.  i am a survivor.  I am strong.  I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins.  I will get up everyday and tackle the world.  I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help.  I will carry all of the groceries into the house.  I will change the water bottle on the water cooler.  I will carry packages to Fex Ex.  I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies.  I will wash and dry laundry and I will never miss a single day of work.   Please help me.   I get up everyday in pain.  It takes me longer these days to do my hair and put on my lipstick.  I carry all the groceries into the house and I have to sit, catch my breath before I put them away.  I wait until I am practically dying of thirst before I change the water bottle on the cooler.  I carry the heavy packages into Fed Ex one 5 pound box at a time.  I no longer walk the dogs- that's what the doggy door is for.  I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results.  I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on.  I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after.   I never miss a single day of work- but sometimes I am working from my bed. It's easier for me to help others than it is to help myself.  While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me.   To their credit how can they know I need help when I don't look or act "sick"?  Ask me.      

KatieB

KatieB

 

Reality vs Fears

I am a two year survivor of a stage 4 gentic autoimmune liver disease.  Although I am stable and in "good" health. I suffer from abdominal and muscular pain- rhumatoid arthritis and side effects from diabetes and Hashimotos thyroid disease.  It's a lot- but it's manageable and I'm living very well with chronic disease. Before I was diagnosed- I was a high energy non-stop person.  I didn't stop working until I had finished every last "to-do" on my list.  I didn't have unfinished projects in my home and I always cleaned up after everyone else.  I rarely slept! Now, I still do that, but I'm a little slower.  My body hurts during and afterwards.I also have a different kind of urgency that I didn't realize I had until my husband called me out the other day. Husband:  "Go lay down!  You have to stop lifting and moving and you need to just rest." Me:  "I can't rest.  I have so much to do." Husband:  "You'll get it done later." Then my fear hit me smack in the face:  What if I'm not here later?  Who is going to do it? Now listen, I plan to be around for many years.  The reality is, I am here now, but the fear of death and my family losing me, however deeply hidden, is real.   How do you deal with your reality and fears?    

KatieB

KatieB

 

Permission to Feel

I noticed something recently at the in-person support group I facilitate.   Caregivers in my group didn't speak up about issues or feelings unless the facilitator or group leader mentioned them first. "Like Jan said, I have feelings of ____  too." After the third time, it occured to me that caregivers are either waiting to have their feelings validated by someone else or didn't realize they had been feeling those feelings. I remember being a caregiver for my father and how all-encompassing that was. Nothing else mattered to me at the time.  Everything was about my dad's cancer, his feelings, his happiness, his peace and comfort.  I don't think I got more than 2-3 hours of sleep a night during those 11 months- there was just so much to do! I completely lost myself and any sense of "me" during my caregiving.  I would never consider taking time for myself, taking a break or openly expressing my frustrations and concerns- that would be selfish- afterall, I wasn't the one in treatment with cancer.  I wasn't the one fighting for my life, right? If given the opportunity then, would I have taken advantage of caregiver resources or support groups?  Would I even know what I was feeling or how to describe it? Until we are able to have caregiver-only support groups in every community, how can we give caregivers the encouragement or "permission" to put a voice to what they are feeling?   How do we as caregivers divorce ourselves from the guilt that accompanies self-care?   Thoughts?

KatieB

KatieB

 

Grief is a Part of Advocacy

Advocates are courageous and brave as they raise awareness or work tirelessly to change injustices and create a better world.

Most people become advocates because they were personally affected by the cause they are fighting for. While they have smiles on their faces and work to inspire...there's a part of their hearts that are always grieving for the love they lost or the life that once was.

At least thats true for me- even after 15 years.

While our personal experience fuels us during advocacy events and awareness days we are also acutely aware of the absence of those who were lost to the disease and reminded that a part of our life is forever changed.

Advocacy is a way to turn a terrible life experience into education, awareness, and support for soneone facing similar challenges.

Advocacy events and activities can be personally rewarding and advocacy efforts can assist others and even change their lives.

Being an advocate is amazing and meaningful.
While I celebrate the progress I've been a part of and the lives I've helped to change, a part of me is alwaying grieving a little bit.

I've learned that grief is most definitely one emotion that fuels advocacy.

As long as I advocate for people with lung cancer, I will never stop grieving for my dad. Everything I advocate for reminds me that he's no longer here. Part of me finds comfort that he is still "with" me after all these years while other relatives have long stopped saying his name. While I'm on a mission to provide all these things to improve a patients survivorship, I'm reminded that my dad never had these things and he did not have a fair shot at survival.

It's really bittersweet. Even though there is a an undercurrent of sadness-- turning tragedy into purpose and a mission honors my dad.

Its also the most rewarding feeling to serve others and help to change their lives

KatieB

KatieB

 

Depression in Lung Cancer Patients

It’s normal for someone diagnosed with cancer to experience feelings of sadness, fear, anger and grief.  It’s when those feelings prevent you from functioning in your everyday life and you feel emotionally paralyzed in your situation for an extended period of time that you need to seek help. Cancer patients experience depression two times more than the general population and studies have shown that mental health and social well-being can affect the success of treatment.  Those diagnosed with cancer have life plans that are interrupted, a change in physical activity and ability, role changes in relationships, and career, may experience a loss of self-image or sense of self.  They also experience fears about the cancer growing within their bodies, anxiety about the success or failure of treatments, worry over their families and caregivers and may fixate on the possibility that their lives will be cut short from their disease. Those diagnosed with lung cancer have an additional set of issues facing them.  Some may experience the stigma associated with the disease and experience anger or guilt, isolation or shame depending on whether or not they had a smoking history and whether or not they feel they are getting adequate medical and emotional support from their local communities. Lung cancer survivors may also feel outrage, anger and a sense of being forgotten because of lack of public awareness and support of the disease in the media, limited treatment options available for the disease and sparse funding that goes to research the disease. Depression is more than just the normal feelings of sadness. Depression is when an individual experiences at least one of the following symptoms for more than two weeks: Feeling sad most of the time Loss of pleasure and interest in activities you used to enjoy Changes in eating and sleeping habits Nervousness Slow physical and mental responses Unexplained tiredness Feeling worthless Feeling guilt for no reason Decreased concentration ability Thoughts of death or suicide Getting help for your depression can help your cancer experience feel less challenging; it may help your relationships with the people around you may give you back some sense of control over certain parts of your life. Visit the National Cancer Institute for more information on depression in cancer patients and call your doctor if you feel like you may be suffering from depression.

______________________

Did you experience depression with your lung cancer diagnosis? Share your tips on how you dealt with your depression by commenting below.

KatieB

KatieB

 

Connecting People to Hope

I recently read a quote from a cancer survivor about online support.  "When I stumble, there are so many virtual hands to catch me.”  This is the same sentiment that has been expressed about LUNGevity’s Lung Cancer Support Community and the many support groups on Facebook.  People impacted by lung cancer can come online and be embraced by others who have walked the same journey and who understand what they may be going thru. There is power in the written word and from receiving support from a group of people.  Building a community of support can help you feel less alone in the cancer journey.

But there are times when people need more. For example, newly diagnosed patients and their families often feel overwhelmed with the medical process, uncertainties and fears and they need additional support.  Some people are not active social media users.  Some people need more than virtual hands to catch them.  What they need is a strong hand to hold onto.  Those are the people who benefit from the personalized support of LUNGevity’s LifeLine Support Mentor Program.

The program, originating from the Lung Cancer Support Community “Support Buddy Program”, is in its 14th year of helping people.  Based on individual needs, LifeLine has supported people online, through email and by telephone.  A personalized match is made between a survivor mentor and a patient and they begin their supportive relationship based on commonalities whenever possible, like age range, gender and stage and type of lung cancer.

LifeLine also matches caregivers and family members to other more seasoned caregivers and family members.  Oftentimes caregivers and families bear the brunt of the responsibility of caring for their loved ones physical, emotional and financial needs and neglect caring for themselves.  Those caring individuals we call co-survivors need support too.

We’ve matched survivors, patients and caregivers from across the country.  We’ve matched people at our annual HOPE Summits and we are a resources for many hospitals, clinics and social workers.

Here’s what one support seeker said. “It’s amazing.  I never knew anyone with a lung cancer diagnosis, now I’m matched with someone like me who has survived these same treatments.  She gives me so much hope.”

If you or someone you know has been impacted by lung cancer and would like to request a LifeLine Support Mentor or if you would like to volunteer to become a LifeLine Mentor, please visit www.lungevity.org/lifeline

Visit our website here if you would like to request materials.

KatieB

KatieB

 

Where Did Everyone Go? When People Disappear From Your Life

Where Did Everyone Go?
When people disappear (physically or emotionally) after a cancer diagnosis. I have experienced being someone with cancer and being someone who cared for someone with a terminal cancer diagnosis and neither side is a cakewalk. At LUNGevity HOPE Summit s, we talk a lot about survivorship and family relationships in the Caregivers session and I’ve decided that being the caregiver and managing those relationships can be stress-filled and sometimes heartbreaking. When my dad was diagnosed with terminal lung cancer, I had hoped that my large family would have rallied around him.  Instead, some sent a get-well card now and then, made obligatory phone calls or sent along emails or news articles about whey grass juicers and Noni.  What would have helped was some actual concern about how he was, how I was, and if we needed any help. Where were they for each chemotherapy treatment?  Where were they when we were on the side of the road and dad was so sick that I had to run to the other side of the car to hold up his head?  That happened more times than I could count. Where were they when his primary caregivers- my mom and myself- needed a break?  A phone call allowing us to vent, a gift card for a massage, or meals, or an in person visit would have been compassionate and very welcomed. Being “too busy” to help out was not a valid excuse to use.  If you want to help you find a way. I was a wife, a mom to a young son, a full time college student and worked full time along with managing my dad’s medical care daily.  Because my mom was a limited English speaker, she needed me daily, physically and emotionally supporting them both.  I didn’t sleep for about 11 months. Being too far away to help was not a valid excuse either.  Phone calls, gift cards, a sympathetic note and words of support can always be sent via email.  They weren’t. That was 14 years ago and I’ve gotten over that resentment- to some degree.  I know after my experience who I can count on and who I can’t.  Those that I can’t count on I’ve virtually cut out of my life.  But that’s not always possible for some people to do. One of the caregivers talked about his frustration that siblings and family members were not helpful to his wife.  They were nowhere to be found. Not only did they not help her thru her cancer experience, they continued to rely on her to care for her elderly parents and came to her for advice and financial issues- not once asking her about her condition. One patient talked about her recent 11-day stay in hospital.  Her family, friends and neighbors had been great in asking her caregiver if they needed anything and how they could help her, but when she was finally released from the hospital she came home to rotten food in the fridge and a front lawn that had died from not being watered. Another caregiver talked about how his mother in law compared his wife’s terminal cancer to her chronic gastritis.  She wasn’t any help to her or her family and never asked details about her cancer. One patient talked about how her husband had set up a chore list and meal train in hopes that her extended family and church family would pitch in.  After the first two weeks, no one volunteered to help her family during their most difficult time. Have you experienced abandonment of family and friends after your cancer diagnosis?  What did you do about it? Do you have advice for those who are going through this now?

KatieB

KatieB

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