I have cancer, hence why I am writing this blog. My actual diagnosis is Grade 2 Follicular Lymphoma, a type of non-Hodkin’s lymphoma. Even before I knew what all of that meant I thought it sounded bad. Over the last couple of months I’ve come to find out that some other people don’t think it sounds as bad as it is. I will expand upon that in this post.
I should mention the origins of this post actually came about due a support-group conference call I was on earlier this afternoon. A group from Illinois invited me to attend their teleconference and speak about my experiences blogging. I enjoyed the chance to interact with other cancer patients and hear other stories. One topic that came up during this teleconference was dealing with people who perceive blood cancers, especially lymphoma, as a “fake cancer”. This wasn’t the first time I’ve heard the term. Actually it comes up a lot in various support groups. Blood cancer patients, again especially lymphoma patients, are often treated differently from other cancer patients. It is an odd occurrence I probably would not have believed if I hadn’t seen it first hand.
One of the problems I believe is that the average person simply cannot relate to lymphoma. Lymphoma is categorized as a blood cancer, but it is the actual lymphatic system which is infected with cancer. How many people (other than doctors) actually know what the lymphatic system is or what it does? I’ve come to find out very few people do. When people think of cancer they think of breasts, lungs, prostates, or some part of the body that can be identified. I’ve had people give me blank stares when I told them I had multiple lymph nodes which had become swollen due to cancer. Actually more than once I’ve had people say “oh you have one of the good cancers” when I try to explain my condition. Every time that leaves me silent. I still haven’t come up with a good response to that. But I remember most people really don’t know what the lymphatic system is and they really don’t know how to relate.
Another problem is that most lymphoma patients, including myself, usually look pretty good. Even after four rounds of chemotherapy I have had multiple people tell me I look great. All of my pain and scars are on the inside. There aren’t any scars or physical signs advertising the fact that I have anything major going on with my body. Actually in my case I probably look better than I did prior to starting chemo due to the lymph node that was restricting my breathing. Now that I can breathe again I’ve been told my color looks better than it has in months. Unless I tell people that every bone in my body hurts, especially my shoulders and lower back, they don’t realize I even have any pain. I do a good job of trying to hide that pain.
I have found a way to get more people to understand I have a “bad” cancer. All I have to do is say the cancer has spread to my bones, which it has. Actually that is probably what is causing most of my pain. As soon as I tell people the cancer has moved into my bones they will say something like “oh my gosh, I’m sorry” or “oh wow, you really do have a serious cancer”. Like I mentioned above people need something to relate to, and bones are definitely something people have heard of.
Don’t get me wrong, I am not writing this post to complain. I do think my situation could be a lot worse. But I think it is important to let other lymphoma patients know they are not alone in how their diagnosis is perceived by some people. I really don’t think any of the people acting as if lymphoma is a lesser cancer are trying to downplay the cancer. Instead I think they have problems relating to the type of cancer we have so instinctively assume or hope it is better than other more well-known types of cancer.