I was diagnosed in 2009 with CLL and am untreated on “active monitoring”.
I’m out of practice; I haven’t blogged for a while. But I clearly remember the cathartic benefits and the satisfaction of being able to get my thoughts in order and on paper. As time marches on these letters to the ether have become a useful point of reference in my journey with this disease. I have thought about a fundamental consideration I struggle with when living with CLL; TIME.
How time is a changing, do I hear more medics referring to “watch and wait” as, “active monitoring”? I’ve dug up a post of mine from a year ago when I thought I had a clear handle on things and was applying my thoughts to our familiar companion; WAITING?
I spend far too much time in my new form having to adjust to the new shape of things and the relentless imposition of this on me. It is unfortunate that when diagnosed with this condition it felt like I was also forced into compulsory time wasting? We seem to spend so much time waiting our turn to be seen, then the investigations, repeating yourself or just waiting for a letter through the door. This is on top of waiting for the disease to do something or waiting to be able to stop it doing something. Living with CLL has changed my perception of time.
Is “Watch and Wait”, the right term to use to describe patients pre-treatment? Bearing in mind a significant portion of the diagnosed may never require treatment?
We watch the clock tick on and seem to wait, perhaps not a good start!!
“Watch and Wait” was a new experience for me it fueled my anxiety. I could easily understand that adjusting my routine to incorporate precaution, a well-balanced diet and simple exercise could help me physically. But was intrigued by the state of mind of people in “Watch and Wait”, and I went to investigate both that state of mind, and stress relief.
“Watch and Wait” has given me time for the reality of what is happening to be clear to me. It has allowed me to remember who I am and what is important to me. Part of this was realising how time plays a part in all this. If we use time then perhaps time won’t use us. Time is not our enemy it can be our ally.
Diagnosis suffocates; it brings fear of imminent danger and a change to your family’s future. That is made worse; when the “fight or flight” reaction wants you to react, but instead can slowly shut you down. Doctors remain calm, appear not to hear you, But in truth, you are on "watch and wait" and nothing seems to fit. In time meeting others, learning about the disease and CLL medicine did help me understand how it fits..
Now, let us CLLs take charge.
If so much of medical speak is formed around abbreviation. Would a change to this term have assisted in my transition? If we have to take ownership of the term and lend it back to the medical profession every now and then, could we make it our own?
Doodling with this as a possibility I have tried to apply it. For example: Active Investigative Monitoring; AIM, a positive verb and noun that could immediately change the initial impression of the process. Did you know that synonyms for watch are; gaze at, look at and stare at for example, hardly inspiring.. For wait, they get worse; stay, remain, hang around, linger, stop, kill time, pass the time. Is it any wonder that Watch and Wait can be so hard to deal with in the beginning until you get past the term?
Add a little Self and you have AIMS. So with a little Self Education, Reading and Time, it could be a SERT that you lose anxiety and stress and are able to enjoy life again?
But them what’s in a name, perhaps it may just be learning not to Watch and Wait, and in time just do a little living with aims?
Nick
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