The above image is from a fellow long term survivor of Hodkin’s Lymphoma’s FB page. Anita was the moderator of a Facebook page for long term survivor’s like me, which helped to provide support and information, in a world, no matter how many doctors exist, long term survivors of many cancers remain unable to find the help that they need.
This morning, I learned of Anita’s unexpected passing. Perhaps unexpected is really an inappropriate word. When someone unexpectedly dies, it is because a person is otherwise considered healthy. And when someone who is considered healthy goes to the hospital, they are handled as such. But cancer survivors, and I will speak only specifically about Hodkin’s Lymphoma survivors because that is the cancer I battled over 25 years ago, are not healthy. In fact, unless you have been treated for Hodgkin’s in the new millennium, or at the least, after 1990, there is a good chance that you were treated with such harsh and toxic drugs, and exposure to radiation four times the lifetime maximum a human being is supposed to ever see. And as statistics often point out, the benchmark of survival is five years. We all look to reach that goal.
It is what happens after that five years, that becomes the problem. Medicine never really studied the late effects on the body of cancer survivors because simply put, we were not expected to live long enough to develop them. BUT WE DO LIVE LONG ENOUGH TO DEVELOP THEM!
Which is why, what Anita has done for literally nearly 300 other Hodgkin’s long term survivors, has made a difference in each of our lives. Anita is not the first person to take on such a supportive venture, as it was to her benefit as well. I first learned about long term survivorship from a woman named Linda Zame who co-founded a support group for long term survivors on the American Cancer On-line Resources site… acor.org . She invited me to that online support group in 1997, and though I was having no issues yet, it was because of what I learned from her, and the nearly 500 others in that group, what I would eventually be dealing with in my survivorship, and how critical it would be for me to be my own advocate for my health care. Sadly, she also passed away following complications from a medical procedure.
The thing is, I knew Anita, fairly casually, only through private message exchanges in regard to operations or situations on the Facebook page. But that does not make her death any less painful for me. Since 1997, I have said goodbye to so many other long term survivors, who did not die from their cancer, but from complications of their survivorship. Because of each and every one of them, any medical professional that has me as a patient, gets an education from me in cancer survivor care whether they want it or not. I learned from others the precautions that need to be taken with all of my issues (cardiac, pulmonary, spinal, muscular, GI, immunological, and psychological) and for that I am eternally grateful to people like Anita and Linda.
It had originally been suspected that Anita was dealing with pneumonia. And with the average healthy person, her symptoms may have resulted in that diagnosis. Unfortunately, discovered too late, it was congestive heart failure, a common fate for those who have survived so long, and for too many, undiagnosed with this condition because medical knowledge is not available or taught to every doctor to look for.
Yes, I am going to have my typical day remembering another survivor who has passed, difficult. I will do my best to be inspired by all the good that she has done for survivors all over, so that I do not overwhelm myself with the thoughts of similar issues that I, and other survivors deal with on a daily basis.
Anita, I know you are in a special place right now. But I want you to know, I appreciate everything you did for me in the brief time we knew each other. Your support and encouragement will be missed.
Thanks for posting this, Paul – everything you say resonates with me. I have come later than you to both Linsa and Anita’s group, even though I was diagnosed and treated 42 years ago now, since I live in the UK and awareness of late effects took longer to develop. Only now are there starting to be clinics, though so far they are all in England, and since I’m in Scotland I would not normally be eligible. So I have learned far more from hearing about others’ experience, and gradually realising that I am not simply a drama queen or a hypochondriac, but that the various symptoms and problems I’ve had are part of a syndrome which I share with quite a few others … And there must be many more who have not yet come across the possible connections. Anita has drawn the curtains back for many to let light enter, as did Linda before her, and I am profoundly grateful for her life.
How touching Alison
Paul, thanks for writing this tribute for Anita. I’m doing yard work and reflecting as you are.
PS I voted a 5 stars for this but my fat fingers might have messed it up!
Well said, Paul.