As many of you know, I have been concerned for a long time about the mental and emotional health of Follicular Lymphoma patients. Many of us are able to Watch and Wait. Many others respond to treatment, which then allows them to go for a long time until the next treatment -- maybe a very long time.
That's been the case with me, in both instances. Two years of W & W, successful treatment, and then 8 years (and counting) of -- what? more waiting? (or maybe just living).
The point is, for many of us, we are able to spend a long time with no physical symptoms. And yet, the cancer is still there. Our symptoms are emotional -- worry, anxiety, helplessness. All of it.
In May, I wrote about this in celebration of Mental Health Month. Mental health has, unfortunately, been in the news a lot lately, usually because of something bad happening to a celebrity. The message in response from the mental health community has been simple: when it comes to mental and emotional health, if you need help, ask for help. And if you know someone who needs help, please reach out.
There's an unfortunate stigma when it comes to mental health. We seek help, without embarrassment, for our physical health. We shouldn't be embarrassed to ask for help for our mental and emotional health, too.
I've been lucky to get to know some mental health advocates. Like me, they are patients with a condition, and they are using their experience to help others. I've learned so much from them.
One of them, Al Levin, was kind enough to let me use one of his blog posts in my May post. I have returned the favor -- Al published a guest post of mine in his own blog. It's about PTSD and cancer -- how a traumatic event (getting a cancer diagnosis) can come back and affect us, months or even years later. I hope you'll take a look.
And the message is the same -- when it comes to mental and emotional health, if you need help, ask for
help. And if you know someone who needs help, please reach out.
I'm grateful to Al for letting me tell my story to some new folks. Al has a lot of good things to say himself, on his blog, and in his podcast. Give him a read and/or a listen.
But mostly, remember to pay attention to your own mental and emotional health, and don't be afraid to ask for help -- from a caregiver, a family member, a support group, or an oncologist. They don't need to be the ones to help you, but they should be able to help you find the person you need.
BOB! Super post!!! I am so glad someone with a voice and platform as yours has touched on this subject. I 100% absolutely agree about the PTSD effect of diagnosis. FL is such a particularly psychological burden condition as it is. The PTSD of cancer is certainly is such a real thing that most people don't realize. The fact that after diagnosis, as a patient, you wrestle with the fact that your own body, something that you have learned to live in and trust for your entire life, has betrayed you. So much of your accepted reality begins to get questioned. It can really leave individuals with a sense of "nothing it safe", and I am just waiting for the other shoe to drop, or even after treatment; for "this to come up again". I for one, began to question EVERYTHING I had known to be true, all because of one slip up. I could go on, but I just wanted to give you a clap for this. Way to go bringing it up.
ReplyDeleteThank you. I'm glad it connected for you.
ReplyDeleteBob
Thanks so much for this post. I just recently got diagnosed and I am doing W&W. It is so hard to think that I’m just walking around waiting for something to happen. I really appreciated everything you said and it makes me inclined to go seek out some therapy.
ReplyDeleteMichelle, I'm so glad I was able to help. Take care of your mental health. It matters.
ReplyDeleteGood luck with the watching and waiting -- the mental and the physical parts.
Bob
Thanks for another great post, Bob. If you don't mind my going on, I'd like to add another aspect to the mental health aspect of those of us on this side of the fence - I like to refer to it as "my 3 a.m. brain".
ReplyDeleteAs an engineer, I pride myself for being analytical and a problem solver by nature. I strangely remember the initial shock of diagnosis only lasting a few minutes (and being grateful that my wife was there to listen to what the doc said after Follicular Lymphoma because he had gone into what I call 'Charlie Brown teacher mode' for what I was hearing). Snapping out of that, we immediately got into options, alternatives, etc. When W&W came to an end and it was time for BR, I agreed immediately, having (with your help, I might add) previously analyzed the situation and evaluated in my own mind the options. Doc was a bit surprised and said that he even had a spiel ready for me since most people need some convincing!
But that's my daytime brain. At 3 a.m. is when I would wake up in a cold sweat from all sorts of (irrational) fears and conclusions, particularly after diagnosing and again at the end of W&W (such as 3 a.m. certainty that I would be one of those very few for whom BR did NOT work). I did mention some of it to my wife but for the most part I kept the thoughts of my 3 am brain to myself, working myself up more and more until the day after treatment when I felt my nodes (tonsil) disappear. After the excitement came the best sleep I'd had in months - and my daytime brain said "see, I told you so!".
Recently, 3am manifested again with some labs that my GP thought were 'funny' and didn't stop until I spoke to my oncologist who had been on vacation (normal for R maintenance!).
My 3 am brain was affecting my rational brain after nights with hours of no sleep and what sleep I had was restless at best. This time I talked to people about it - and it helped!
Doesn't always have to be a professional, IMO. Friends and family can help too - even if it's simply by assisting you with your schedule to give you some time to rest during the day and relieve the stress. But don't just internalize the stresses we face. No good can come of that.
M
Thanks, M. I'm with you -- fairly rational during the day, but it's always at night when my mind gets away from me. My wife is a bedtime worrier -- bad thoughts hit her after her head hits the pillow. I always tell her (and try to remind myself) to think about the issue again in the morning, after a good night's sleep, with a clear head. But that's a lot easier said than done.
ReplyDeleteI've been spending time lately with someone who was recently diagnosed with cancer (not FL), and being reminded about how much cancer messes with our heads. Good news seems better than it should, which makes bad news and bad days seem worse than they probably are. It's awful.
But I agree -- it doesn't need to be a professional that we talk to. Sometimes just a friend or loved one or someone in a support group can make a huge difference.
Good luck with things. I hope you don't have any more 3am worries, and all of your labs and scans are perfect.
Bob