Saturday, June 24, 2017

ASCO 2017: Friends in need are friends indeed! Here's to the caregivers!!!

I do NOT believe in blaming the patient (their diet, stress, attitude, etc., etc.) for the development of their disease process...much less death!!!! I do believe in hope.  I believe in finding joy in every thing we can and living every minute of life to the fullest.  Play hard. Work hard.  Love and laugh even harder.  Those were my abiding principles before melanoma and they continue to be so now. However, as I've noted before, my belief that you can emote yourself out of cancer falls more along these lines:

I wrote this in 2012 ~ As much as we would like to truly believe that positivity can overcome anything and some studies demonstrate a beneficial effect from the "laughter is the best medicine" sort of thing.  Many books and studies out there prove otherwise. David Rakoff,  the incredibly funny, journalist and writer (1964-2012) talks about many of them in his book "Half Empty".  He experienced 18 months of chemo and radiation at the age of 22 when diagnosed with Hodgkin's disease, only to have a tumor that eventually took his life recur in his shoulder and metastasize.  Perhaps, he said it best in an interview with John Stewart.  "There was a study that showed that the long term mortality of people with lousy attitudes is no different from people with great attitudes.  So, you can be the worst bastard on the ward and you will not die at any greater rate than the other people.  People will simply be gladder when you do!"

On the other hand...going it alone in life is never easy.  And a cancer diagnosis can be extremely isolating.  There are scans and procedures which you must endure alone...even if there is someone who really wants to be by your side.  There are dark thoughts that are very difficult to share. And, some folks just can't (won't!) stand alongside to help you handle it.  I have found incredible solace and support in many of my dear ones, but I have also lost some I would have previously bet on to be my greatest advocates.  It hurts. And it happens...fairly often.

Now, there is this:

The effect of loneliness on cancer mortality.
ASCO 2017. J Clin Oncol 35, 2017. Dilppolito, Ambrosini, Shams, et al.

Background: Convergent findings indicate the need of broadening the vision of cancer beyond known prognostic factors, as many variables of different nature equally affect the course of disease. Loneliness has been found to be associated with various health outcomes, but its relationship with cancer remains unclear. Here we aimed to investigate the specific effect of loneliness and other demographic, psychological, and clinical variables on cancer mortality and to validate the Italian UCLA Loneliness Scale in cancer patients. Methods: This descriptive and correlational study was conducted at the Veneto Institute of Oncology in Padua. 400 patients undergoing chemotherapy from 01/2014 to 06/2015 were enrolled. The sample was stratified by sex and age (4 groups, 40-80 y). We collected demographic, clinical (site and stage of cancer, type of chemotherapy, death date), and psychosocial [self-esteem (RSE), perceived social support (MSPSS), social interaction anxiety (SIAS), personality (EPQR), and depression (BDI)] data. Results: GLM analyses: loneliness was higher in women than men and it linearly increased with age. Loneliness was also influenced by marital status, cohabitant offspring, and educational level, but not by clinical variables. Correlation analyses: loneliness was inversely related to RSE, MSPSS, and extroversion, and directly related to SIAS, neuroticism, and BDI. More importantly, a hierarchical binomial logistic regression revealed that patients’ mortality was reliably predicted by gender, stage of cancer at diagnosis, time from diagnosis to UCLA collection, BDI, and UCLA. In particular, high BDI predicted higher mortality; surprisingly, after controlling for BDI and other effects, high loneliness predicted lower mortality. Conclusions: Our results replicate prior research and reveal a surprising association between loneliness and mortality risk after partialling out the impact of, especially, depression. This suggests the role of loneliness on cancer course as an important health concern.

In this study, 400 peeps on chemo were evaluated utilizing demographic date (age, sex, marital status, well as stage of cancer) along with psychological data that scored them re:  self esteem, perceived social support, anxiety in social settings, personality type, depression and loneliness. Loneliness was higher in women, increased with age...was also influenced by marriage, children living in the same home, education (I presume folks with those things were less lonely, but that is not specifically stated), but NOT by clinical variables.  Folks who were extroverts with higher self esteem and greater social support were less lonely while those with anxiety, neuroses, and depression were more so.  No surprise there.  However, mortality was reliably predicted by gender, cancer stage, depression and loneliness.  Of course, if you were very ill physically, it would be hard NOT to be depressed!!  In fact, when the researchers controlled for other effects and just looked at loneliness vs depression...depressed folks still had a higher rate of mortality, while those reporting loneliness did not.

So....what does all this realistically mean?  Being ill is hard, lonely, and depressing.  The person affected doesn't feel good, faces a barrage of treatments that at best are: confusing, time consuming, expensive, often miserable and painful - while simultaneously losing personal relationships and status they held prior to being ill at home, at work, and socially!  The folks around them don't know what to do exactly and necessarily, must go on with their lives.  They are often forced to deal with holes created by the affected person's illness:  child care, household chores, salary that is now diminished... not to mention help meet the basic needs of the cancer friend with doctor's appointments, self-care, and on and on. Hard stuff...all the way around.

While no one can make another person happy and illness is depressing - no two ways around it - the role of caregiver is probably the most difficult thing about cancer, yet the biggest gift EVER to those of us with it.  I absolutely KNOW that I would not be here today were it not for my B, my kids, my sweet sister Ruthie, dear friends and my crazy nurse peeps.  Would. Not. Be. Here.  So...if you ever think your role as caregiver is insurmountable, I don't blame you.  But, I can assure you, you are giving the best gift in the whole world to your cancer person.

Additionally, cancer peeps are stubborn.  Well...some of them are....
I actually came across this note just this week!  All I can say is:  A) I did give it to B.  B) He is a sentimental nut.  C) Some cancer peeps do not obey or take direction well.  {I don't happen to know any personally, but....}
All this to say, if you feel you need help with depression, feeling down, coping with all the shit that a cancer diagnosis throws at you - as a cancer patient or caregiver - seek help!!!  You caregivers out there....try to get your cancer friend to seek help if you think they are in need.  Call their provider if you think it is warranted.  Perhaps, your cancer friend will be more amenable to suggestion than the one B and my nurses had to deal with...

Everyone is different, but if you are at a loss as to what to do or say for your cancer friend, there are many good sites out there to give you suggestions:
How to be a friend to someone with cancer - The American Cancer Society
Supporting a friend who has cancer - Cancer net
Ten tips for supporting a friend with cancer - Sloan Kettering
What to say and do....and NOT!!...for a cancer FRIEND (not patient)! - from me!!!

A thumb's up, while on the potty pic, may not be the way to make YOUR cancer friend's day, but Tammy B knew it was a great way to make mine.  I have a collection!!!  They still make me smile - No. Matter. What.
I wish I could offer more, but here is a bouquet of beauty, love, and warm wishes to each of you.
Take care.  Seek help when you need it. - much love, les


  1. Tammy is a nut! I remember those pictures...

  2. As a newly minted caregiver, dealing with TSD (still in the firefight, so not entitled to the P, yet), I really appreciate this advice. The best things that happened for us so far are friends bringing lunch and dinner, and friends who have showed up to mow the lawn.