There is a nice article in the NYT about anxiety after cancer treatment. Let me tell you about my experiences with anxiety and leukemia.
During treatment, I had some anxiety, but mostly I was so busy with tomorrow we need to check my blood and then we will need to recheck on Thursday and I need to call the disability people today and Ellie needs new shoes for gym and Diane is coming over for coffee this afternoon and ... that I could always distract myself if there was anxiety. I mentioned during the treatment that I thought that the most anxiety provoking part would be after it was done waiting for my first followup; that I thought the silence would be deafening. I was sort of right.
The end of my treatment could only be identified in retrospect (remember I had been thinking I was going to get three cycles and then either a fourth cycle or an auto-transplant and then the plan suddenly changed to three cycles is enough?) and I think that may have had some effect on why my end of treatment anxiety was delayed (or maybe I'm just a little slow). My treatment really ended in December, but the decision that it had ended didn't happen until mid-January and I was already back to work and starting to get more and more engaged by my work. Then Dr. Hill went out and it was time for my first follow up. I was doing more and more in my life: buying a house, starting an outpatient program at Dartmouth, medical directing at the Community Hospice House and CMC and the home team and, by the way, recovering from cancer. I had had a couple of bouts of superficial infections and each of them required the fire drill of checking labs and worrying more or less for six, eight hours until some one gave me the results (or I looked them up myself which I try not to do because I try to be just a regular patient). Around about this time, I began having this free floating sense of anxiety most of the time. The best explanation is you know that feeling when you have to make a phone call you are really not looking forward to ("I'm sorry Mrs. Jones, but I made a mistake and miscalculated..." or something equally awful.)? Well, that feeling just followed me around for a couple of months for no particular reason and sometimes I'd stop and try to figure out why and couldn't ever find a reason, but usually I didn't have the time to spend and would just have to do my day with that feeling hanging over me.
About this time, I had my first follow up with Dr Bengtsen and told her this only to have her say, "O, we see this all the time. This is very common; a lot of people get much more anxious after treatment. I think because they feel they've been watched so carefully all these months and now they're sort of on their own." Gosh, that was helpful. I mean, I knew that, had seen it myself and had predicted something like that, but--still--to have someone say it explicitly was tremendously helpful. Why didn't fifty people say that to me ahead of time? (would it have helped? maybe not, but--still) The whole anxiety thing did not fade away then--that took some meds and a lot more time--but I felt like having her say explicitly to me that this is normal was really helpful even though I already knew it.
My next follow up is July 25th. It seems like usually the week before I find myself waking up at 3 and calculating and perseverating. I wonder if that will decrease as it gets so that I've done followups more and more times.
I am grateful the anxiety has receded. I am hopeful it never has a reason to return.
(P.S. Stuff like this is why I'm interested in survivorship care and why I think palliative care has a lot to offer in survivorship. Sorry for the advertisement.)