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My CLL journey so far

Posted by
08 Aug 2017

An update on how I've been getting on in the two and a half years since my diagnosis with CLL

Shortly after I was diagnosed with chronic lymphocytic leukaemia I discovered the Bloodwise website and wrote a blog to express my shock and dismay at my unexpected diagnosis. The outpouring of empathy I received was truly uplifting and I will always be grateful for it. 

In the 2 ½ years since then I’ve learned a lot about CLL. I try hard to maintain a healthy lifestyle, and to live my life without obsessing about my condition. I seem to have a fairly unaggressive form of CLL and so far have experienced only one symptom - fatigue. My local hematologist-oncologist in Sarasota, Florida, Dr. Anjan Patel at the Florida Cancer Center, monitors my condition every three months and answers all my questions with unfailing respect.  I feel we are designing the course of my treatment together.  Every six months I see another recognized CLL specialist at the Moffitt Cancer Center in Tampa, Dr. Javier Pinilla, who will collaborate in the treatment decision if and when it becomes appropriate. 

My daily routine normally includes lap swimming at a beautiful Olympic pool. I am 72 years old, and my swim companions are other senior citizens who are trying to keep in shape and egg each other on. My diet has been heart healthy for decades, so the only tweaking I have done is to try to eat more fresh fruits and vegetables.  At my age I have several other conditions which encourage healthy habits: active surveillance of prostate cancer and pre-diabetes. I’m satisfied with all my doctors and moderate medications, and I hope my ship will keep sailing on as it has done so far.  But like all of us I am obliged to live with uncertainty about the future.

Like many of my relatives I have a long history of mild chronic depression. I control it with exercise and avoid alcohol. But CLL has brought fatigue to first place among my complaints, and that in turn can bring depression. For me there is certainly a direct connection between feeling tired and feeling depressed, although it’s important not to confuse the two. I think that most of us with CLL suffer from fatigue and there has been much discussion of ways to minimize or at least forget about it. I have several strategies: getting exposure to sunlight every morning, keeping a journal at the breakfast table recording problems I need to solve and listing things I’m grateful forand pushing myself to stay in touch with friends and loved ones near and far. Yet we know that fatigue and the depression it may bring are a solitary personal battle; the challenge is to internalize whatever good news may come from outside. 

I also take great comfort from a poem by John O’Donohue called “Blessing for one who is exhausted.”  It reads in part:


Take refuge in your senses, open up

To all the small miracles you rushed through.


Become inclined to watch the way of rain

When it falls slow and free.


Draw alongside the silence of stone

Until its calmness can claim you.

Be excessively gentle with yourself.


Stay clear of those vexed in spirit.

Learn to linger around someone of ease

Who feels they have all the time in the world.


Gradually you will return to yourself,

Having learned a new respect for your heart

And the joy that dwells far within slow time.  


For those of us who live alone the CLL journey does not always include family and friends. But this should be changed. 

In the beginning I never mentioned my condition, but I’ve learned to share gently whatever I think my listener might be interested in and can bear.  If the time comes for treatment, there will be rides needed and who knows what kinds of support, so it’s best to talk over some game plans, even if only briefly, with those who might help.  We’re all mortal and we’ll all need help someday. On the other hand, why not enlist friends and family in positive supportive activities, and not just prepare them for some potential crisis? There are marathons to be run, fundraisers to encourage, coffee to be chatted over and many other ways to stay active with our friends. True friends want to be part of your life, not be left in the dark! 

I must not forget the right to a little self-indulgence. Mine is a long soak in a hot bath with a good book before bed, and perhaps a piece of dark chocolate.  If there was ever a time to be good to yourself, it is now.  Did I mention the comfort of a well-timed nap? I’ve spent a good portion of my life traveling, seeing new places in the world.  My family urge me to keep traveling, but I’m not so eager to face tiring air flights and jetlag.  What’s wrong with rediscovering the pleasures of home and a well maintained healthy routine?  Each of us must ask what’s important to us now. 

Finally I’d like to mention Dr. Brian Koffman’s excellent blog at It is a great resource for information, research, and current treatments. A CLL patient himself, Dr. Koffman is always reminding us all to “Stay strong, we are all in this together.” 

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