Deedle1

Good Morning Earl.
Welcome to LCSC,so pleased to make your aquaintance.I arrived here some time ago,looking for new friends who shared my lung cancer dx,what a blessing that turned out to be.I had arrived at a time when I was struggling with coping with my cancer,not physically more mentally,how can I shake off this feeling that I had no future? this cancer is going to kill me and in the not too distant future.My posting here regularly, getting to know so many new friends helped me to realise that I can be a survivor and once again began to return to being the person I was prior to my cancer dx,ie,happy optomistic,enjoying life to the full.I think with the passage of time and the support of family and friends ,we can all cope with what ever life can throw at us.
I found a new friend at the outset of my cancer journey,who was ten years my senior and was dxd with SCLC in 1993,he was given just 2 months to live by his Doc,Robert Lowe was'nt going to lie down to that threat,he asked for and got the strongest form of chemo that would give him a fighting chance of life.Such was his chemo regime,that was hospitalised throughout its administration,in fact he was so ill at the time,his family was called to his bedside on more than one occassion,since his Docs did'nt think he would see the next day.Remarkably,the tide began to turn for Robert,he began to make progress in recovery,he returned to full health.Then some years later Robert was dxd with NSCLC,again he had his then made a full recovery.Robert and I were both born and brought up in the same District in Glasgow,we went to the same schools,despite Robert being ten years my senior,we even shared many of the same teachers,what fun we had with our trips down memory lane sharing anecdotes of our respective life experiences.Robert Lowe set up a a lung cancer support group with a lung nurse called Penny Downer,Robert invited me to join.My thoughts were,Lowe and Downer,not very auspicious names for a support group?of course I joined up,I was and still is great fun to me to attend the group meeting.Sadly Robert passed away earlier this year,he had surgery to remove a tumour from his stomach and throat,these tumours were not related in the slightest to lung cancer,the operation he had was totally successful,however later he took a chest infection that his weakened body could not overcome,despite him fighting it all the way.Robert died cancer free.He had become the UKs longest surviving duel lung cancer patient-20 years.
It is my intention to follow in Roberts footsteps and survive 20 or even more years,if Robert can do it,why not all of us?.My very best wishes to you for the complete success of your treatments.

I guess I can comsider myself a survivor today. My MRI remains clear.... with just the hole from last June's surgery on my brain. My neurosurgeon told me I've already beaten the odds of survival since the med books gave me just 6-9 mths... Although my wonderful med team stretched my time to possible 1-2 yrs. My 3 mth MRI's and neuro visits have changed to 6 mths now. Isn't it womderful when the beast backs up amd hides for awhile.?1?!

I answered this one many months ago. I have a friend who says, "If you didn't die on the spot when you heard you had cancer, you are a survivor!" I can support that stance. However, my wife did not feel like a survivor until she reached a point where she felt well enough and was relatively clear of the beast -- which was about 9 months after diagnosis (also the time of survival she was given). So at the point she felt she had beat the odds, she felt well and she was relatively clear, she said she was then a survivor, and she has felt that way ever since. So, I would say that being a survivor is in the eye of the beholder. Don

I love to communicate with different and interesting words. I think words are delicious and I think the right words can inspire others, especially over the internet. Some people may blame my love of words and catchy phrases on my past pee-wee cheer-leading experience (an elementary version of “Bring it On!”) or the fact that I was a reporter for my college paper (yes it was actual newsprint back then) or maybe it’s because I’m a mom to two really clever kids, who teach me new words and phrases everyday. For whatever reasons, I love words. I also love to make up words.

Making up words and phrases is my thing. When I’m having a bad day, things are “craptastic”. When something I’m counting on falls through, that’s a “poop-thing” to happen. When I’m having a great day things are “awe-MAZING” or “beautimous” and when I’m describing our annual HOPE Summit , it’s “HOPEtacular.”

I know it’s not the most professional language to use, but the patients and families I support see enough professionals on a daily basis. By the time they get to me, they are looking for patient navigation, emotional and practical support, a one on one real time connection, and hopefully at the very least, a smile. Those are things I can deliver on.

CRITICS AND PESSIMISTS

Recently I was cautioned by a fellow survivor over the use of some of my descriptive words. Survivor. Strength. Hope. Warrior.

I’ve read the handful of articles over the years who have said that words of “hope” and “strength” and “survivorship” don’t cure cancer and are just an added pressure placed onto patients. They want people like me to “get real” and not offer false hope.

I can truthfully say I’m the first person to “be” real and not offer false hope. I’ve held the hands of each of my parents as they took their last breaths and I’ve lost countless to lung cancer in my 13 years as a patient advocate in the lung cancer community. That’s as “real” as it gets, folks. While I realize the seriousness of what people impacted by lung cancer go through, as a cancer survivor myself I also believe that every day should be celebrated in some way.

Words like hope and strength, courage and fighter have been used to describe people impacted by cancer long before I ever became a patient advocate. The difference is I use these kinds of words to describe and inspire those with lung cancer.

HOPE IN RESEARCH

Historically, a lung cancer diagnosis was never thought of as “hopeful”. It has been described as a death sentence. There were rarely any “survivors” and the word “strong” wasn’t used to describe someone who had been diagnosed with the deadliest cancer killer and going through extremely harsh treatments.

While lung cancer still claims the lives of more people than any other cancer and still receives the least in funding dollars, there has been marked progress in the 12 years since my dad was diagnosed. The science is very encouraging and LUNGevity, the largest lung cancer nonprofit, funds more lung cancer research than anyone else. I’m seeing more people live longer with lung cancer and live with it as a chronic disease. I see an integrative and interactive medical community and collaborative treatment team. I see young researchers excited and interested in making an impact against this disease. I see a better quality of life for people diagnosed with lung cancer, clinical trials and many more treatment options today than 10 years ago. We have a very long way to go in our pursuit of making lung cancer a survivable disease at all stages of diagnosis, but there has been progress.

SURVIVORS DO EXIST

Patients feel stronger. They feel hopeful. I’m meeting more and more multi-year survivors. Through events like the HOPE Summit they feel empowered to make their survivorship the best it can be- whether that survivorship is just months long or many years long.

And that IS hopeful.

I don’t mean to negate the gravity of a lung cancer diagnosis when I use the word “hope”. I don’t ever mean to imply a positive attitude and some crafty words is all anyone needs to survive this disease.

What I do mean to do is inspire and encourage people with my words.

I use the stories of survivors to inspire people who are newly diagnosed so that they don’t feel isolated or alone. When I see a photo of a stage 4 survivor in active treatment, who has a multitude of side effects, walk on a treadmill or complete a cancer walk, the words I use to describe that patient are COURAGEOUS and LUNGevity STRONG.

No. No amount of cheerleading and none of these clever words or descriptions will cure lung cancer. But let me tell you what it can do.

Words can make you laugh or smile. They can inspire someone on the brink of despair. Words can refill lost hopefulness. They can offer emotional support to someone who otherwise may have no one. Words can educate someone enough to get a second opinion, to ask questions, speak to their doctors and empower them to advocate for themselves and improve their quality of life.

I think that’s HOPETASTIC.

I was diagnosed with a stage III lung cancer in April 2008. After a summer of radiation and chemo, followed by a lobectomy of my upper right lung, more chemotherapy, and ending with prophylactic whole brain radiation 10 months later.
Over the past year, or probably longer, I have been experiencing situations of being overwhelmed to the point that I must rest; slow processing information; slow to react; too much distance between thought and speech; loosing my train of thought in conversations; memory inconsistencies; easily disoriented, and more.
I see a neurologist, had neuropsych testing, and was prescribed aricept. I do not have Alzheimer's.
In addition to all the chemo, my new concern is progressive side effects from whole brain radiation.
Has anyone else experienced this?
 
NOW in 2016, I am taking Namzaric which combines memantine and donepezel in one pill as prescribed by neurologist. I take nuvigil on a daily basis to combat fatigue. 
My radiologist said I would not be here without brain radiation. She said we are in uncharted waters in my post treatment because we have so few survivors who had brain radiation.
I am coping with the side effects of brain radiation by stopping or reducing activities that I are difficult and taxing, but also trying to find new things that I can do.
Would I have this treatment again? Yes, absolutely. I knew the side effects going into treatment and was not surprised when they appeared.