I was intrigued by an interesting post by Karl Swartz today on the CLLresearch group at Yahoo. Karl is a very active patient advocate and president of Patients Against Lymphoma, lymphomation.org
He posts regularly to the community much about CLL, on this occasion his thought provoking post allows us to forgive ourselves for not feeling positive all the time. It’s OK to be a grumpy CLL patient
How does your outlook affect you and others around you?
GUIDELINES AT DIAGNOSIS: CAN WILL POWER AND POSITIVE THINKING HELP?
" While being optimistic helps to improve our quality of life, the question
has been studied (see ACA.org item below) and the evidence shows no link
between attitude and outcomes.
So we do not have to worry about worrying, nor should we blame ourselves for having lymphoma or if the condition gets worse. It is the biology of the condition that determines its behavior - including the response to therapy.
Fortunately, for lymphoma a different class of therapy can be effective when the first does not work optimally.
For more information on the limits of positive thinking we recommend:
Thanks for this Nick and is why I stay grumpy and sometimes pessimistic, without feeling guilty!
We need to be cantankerous and belligerent at times, while we stand up for ourselves, if we feel we are being marginalised. How often do we smile and even thank people for poor and unacceptable care?
.......of course I am being a bit 'tongue in cheek', I hope you all know!
However, it is unrealistic for us to be happy and positive all the time (if any)......we do have reasons to be fed up and after all, we are all merely human and have enough to put up with. We don't need to punish ourselves as well. We are what we are.
I think everybody is different and has to handle this in their own way, so, in reality it is not that much different to the rest of life.
For me, going back to my first meeting with my consultant he made a comment along these lines.... I'll do my best for you, in exchnge your best is to remain positive.
I cant remeber. The exact words, however, through my six months of chemo i kept that in mind. I totally accepted that almost like a contract in my mind. Whilst none of us know what the future brings i'm keeping those thoughts with me for the future.
On thing for sure inmy mind, all through the six months i tried to look on the upside of every situation and I 'm sure as i tried keep my part of the deal it helped, more than getting grumpy or depressed would have done.
Robert,a very good view indeed,i have always made my CLL my enemy ,the new advert for run for cancer seems to be doing that also,when i do think of my CLL,which is not often,i say to it,you will not win,you might have guessed by now, the neighbours run in LOL.
When I was first diagnosed, my doctor said, 'just keep on doing what you're doing'.
So I am!
For every study into the effectiveness of positive thinking, there's a counter study producing an alternative oucome. I'm not totally convinced as to whether my thought processes impact on the disease progression/outcome but they do impact on my quality of life and ability to live with it. I do believe worry impacts on our coping capacity and surely it must put pressure on our immune systems?
We're all unique individuals with CLL and it doesn't stamp itself onto a blank sheet. So previous morbidities, family problems, financial worries etc play a part on how we cope. Plus the all important personality profile. CLL has made me more angry and I'm fighting the 'grumpies' more. I cope well but it manifests itself in irritability.
So whilst I can't always feel positive, I try to resist total negativity. And for me that's greatly assisted by meaningful support. I don't expect anyone to have any clever answers and I don't want pity but give me the opportunity for a good old rant and a wallow once in a while and it helps! But I still want plenty of laughs too.
While I respect the scientific research it does seem counter intuitive.
I would also comment that the opposite, or negative thinking, such as I have cancer and will soon die, is even more important.
If one thinks negatively, or is pessimistic, surely one is less likely to take your pills on time, attend the doctor as often as one should, eat a proper diet and take healthy exercise.
Of course it is human nature to ‘ have a bad day ‘ when perhaps the weather is cold grey and rainy, but it should only be the occasional day, and not a long term effect of our CLL diagnosis.
One thing that never fails to make me feel better is a visit to a hospital.!
Most of us with CLL will walk into the hospital and to our consultants. But look around you, and see the people who will never be able to walk, who cannot see or hear, who are forced by their disease to spend their days just lying in bed. Then one realises how lucky many of us are.
In a way this negative thinking of life and our CLL, could be a bit like a mild form of depression, and it is interesting to read the latest research clearly showing the benefits of getting back to the roots of humankind. By this they mean a simple walk or visit to a local wood or forest, a visit to open moorland or working with animals and especially horses. The latest research clearly showing how this lifts the mood of the patients.
So in spite of the research mentioned above, I will try to remain optimistic in my thoughts and so improve my quality of life. This will ensure that I then take my pills on time, visit the doctor as required and stay as physically healthy as possible, all of which are beneficial for those with CLL.
Thank you for writing It is interesting reading your replies, this thread has allowed me to explore my own feelings.. There is no doubt in my mind that positive thinking aids me cope with the tasks of daily living. It has greatly aided in the recovery and management of other issues developed by other morbidities. Also in just coping with the effects of CLL .I posted the article because it highlights for me how unless proven by studies much is overlooked in medicine. Remove hope you remove motivation, if we all just thought "que sera sera" where would we be?
There are mixed messages in the commentaries and studies accompanying the article. I guess it does bring home to me the inevitability of the disease that the genetic programme of my particular disease is going to play out (but like ordinary life I don't know what that will be) so I can continue to live relatively normally if a little altered. One of the reasons why prognostic markers alone are not as effective as Doctors may wish; is that there are so many aspects involved in daily living that will impact on outcome. How many of these influences are as a result of our thought processes, I would suggest more than is given credit for? .
It seems that having a positive outlook helps me to address my lifestyle (make adjustments) and has improved my general health (or ability to cope). It always strikes me at meetings how healthy we all look because of this.
I am a glass half full person so positive thinking is in my fibre, it motivates me and allows me to believe that the result of this may allow other influences to impact on my future outcome. Of course it can never be proved that this would be as a direct result of thinking I thought I was in good health before a cascade of medical traumas accompanied by CLL diagnosis resulted in a more negative outlook and way of living. This itself was enough to create issues that may impact on my outcome.
What about the reverse thinking that has aided my recovery and coping. Is this going to impct on outcome? It already has.
Which condition is going to get me? One of the diseases or life?.
I am voting for life.
However for those who are glass half empty people, Do not feel guilty or worry if you cannot dance for joy when living with CLL. It may not affect CLL.
While positive thinking certainly helps in day to day life ( why not be cheerful its better than being miserable) for myself I find stress has a very negative effect on my CLL. Finding ways to cope is better than giving up but yes you are allowed a bad day now and again. Being positive also helps for carers as well as the medical profession. Even when you are ill and feel horrible taking it out on them makes you a difficult patient who no one likes. Just saying please and thank you and even managing a smile helps the world go around. But beware false or over the top cheer it comes across as shallow. Keep calm and carry on.
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I thought I was in good health before a cascade of medical traumas accompanied by CLL diagnosis resulted in a more negative outlook and way of living. This itself was enough to create issues that may impact on my outcome. 
Survey for CLL patients having taken Venetoclax or Acalabrutinib
