There is not doubt, that the diagnosis of any cancer, will often leave the patient with a feeling of isolation. After all, a diagnosis polarizes all attention to one person, the person diagnosed. Nothing and no one else matters. But that does not mean that others will not be affected by the diagnosis. Before I get to that…
There is a world of information about lymphoma available today that was not when I was diagnosed. All I was able to do, was to try and research, via news records at libraries for success stories on Hodgkin’s Lymphoma. Needless to say, that took up a lot of time, and really only produced on story, which was about Carl Nelson, a football player for the New York Giants. He had survived Hodgkin’s Disease.
But the majority of support came in the way of two counselors that I had come across. John was a giant redwood of a man towering over me by at least two feet, but with a very soft heart. He bore the initial brunt of my venting as I went through the various stages of Kubler-Ross, (anger, denial, bargaining, depression, acceptance). Later I would meet Ilona who would be with me through my chemotherapy days. Sadly, she died a few years ago with her own battle of cancer, such cruel irony. But I did not just have counselors, my oncology nurse is the only reason I was able to get through my treatments at all. Her comfort to me, was not as a nurse to a patient, but almost as a son as I am pretty sure I was young enough to be her son.
Family can play a big role in support as well, but it can get very complicated. Depending on the family member, you can find acceptance and true support, or possibly denial, avoidance, and even shame. You have to remember, that for many older family members, they are only likely to know one thing about cancer, “everybody dies from it” or they can “catch cancer.” I have already addressed that in prior posts. For younger family members like young children, it is critical to be sensitive to what they hear about cancer. They can be very quick to believe that a person will die if they hear that even just one other person had died. Siblings and parents are profoundly affected by the diagnosis of cancer and I feel are probably the best source of support.
The most important support from a family member is going to be that of a significant other. That person is going to be with you most likely every step of the way. But just as a cancer patient can feel alone and isolated, so can the significant other who is thrown into the position of caregiver. Not only does the patient surrender their life and whatever they were doing, but now, so is the significant other who otherwise has done nothing to deserve having to sacrifice their life and activities. This can lead to resentment, and often does. Which is why it is so important to keep the lines of communication open, and your minds. Cancer is a difficult thing to deal with alone.
As I mentioned, I was limited with the support I could find. Today, there is literally a whole world out there of information and support. I have links listed on this page to organizations, support groups, and other information about dealing with Lymphoma. But just as I offer in my disclaimer, I must remind you, it is important that realize who is your doctor, who knows your actual situation. Those are the ones that you ultimately need to listen to, and if you have questions, ask. The links that I provide are very good with that kind of support, making sure that you realize we are not doctors, will never give out medical advice, just personal experience and information.
I am glad that you have found “Paul’s Heart.” It is a start to finding support and information that I know would have been beneficial to me had I had it back then.