When I first started this blog, I originally said that the purpose of this blog isn’t to tell my story, but rather to create an awareness of the different long term and “late effects” that can show up many years after cancer treatment. Well, I’ve discovered something. I cannot do this blog if I don’t talk about myself. Surviving cancer is not just a concept to discuss from a distance. Surviving cancer and all that comes with it is up close and personal. I find that I cannot separate the me out of this. I cannot just post articles and guide readers to sites with helpful links. So I will be posting about myself, as well as, hopefully, giving you something to think about.
So, let’s talk about Hypochondria. There is no such thing as a hypochondriac cancer survivor. Period.
According to Wikipedia:
Hypochondria is often characterized by fears that minor bodily symptoms may indicate a serious illness, constant self-examination and self-diagnosis, and a preoccupation with one’s body. Many individuals with hypochondriasis express doubt and disbelief in the doctors’ diagnosis, and report that doctors’ reassurance about an absence of a serious medical condition is unconvincing, or short-lasting.
What is wrong with this picture? I don’t doubt that there are people suffering with this problem, and I don’t want to make light of that, but the fact is, if you are a cancer survivor, an attitude of watchfulness and listening to your body, and yes, reporting each new symptom, could one day save your life. The truth is, cancer survivors are more likely than most to get secondary cancers from their treatment methods or develop heart problems or other life-endangering conditions.
Telling yourself “it’s all in my head”, or worse, allowing a doctor to tell you that, could be a dangerous attitude to adopt. If you’ve survived cancer and are having new symptoms, get them checked out. And don’t let your doctor shrug them off.
That doesn’t mean you go around searching your body for symptoms after watching en episode of House. Nor do you rush to the doctor with every little ache or pain. But you must remain observant, and if you notice symptoms that are not previously explained, and these symptoms last longer than a week (or shorter if they are severe) then you need to get them checked out.
When I was younger, in the years following my cancer treatment, the doctors taught me to be vigilant, to come to them about any new symptom. Once I hit the 5 year survival mark, though, I was let loose. I was no longer a cancer patient, I was a cancer survivor. And of course, moving on with my life, I happily gave less thought to the cancer, but always in the back of my mind, there was that thought of vigilance that had been implanted in me when I was 16.
Like many young people I moved about, went to college, ended up settling in a city, found work, got married, all the things people usually, do. But I was no longer getting any kind of followup for the Hodgkin’s. I changed doctors as I moved about, and each time there was a medical history to fill out, I mentioned it, and the doctors were usually impressed that I was still around. But over the years I got mixed reactions when I would tell of any new symptoms. More and more, I found myself hesitating to tell my doctors everything. I didn’t want them to think I was a hypochondriac.
I can remember one Christmas in particular, during my early 20’s, when I was with the family visiting my grandparents. I caught a bug, bronchitis, the flu, whatever. and had a high fever and felt very ill. The cold meds weren’t helping and my mother wondered if I had a bacterial infection. The doctors and pharmacies were closed, it was a small town, and the only resource was to go to the local hospital emergency room, so there we went.
There weren’t many people around, it was not busy, I only had a short wait. During that time I had to fill out a short questionnaire about medical history. One of the questions was about pre-existing conditions or something like that, and so I mentioned the Hodgkin’s and treatment, and the dates. When I went in to the doctor I told him about my fever and flu symptoms, and asked him if he though I needed antibiotics. He checked me out, rather hurriedly. It was obvious he didn’t much want to be there at Christmas time. Finally, he wrote me a prescription and as he handed it to me, looked at me scoldingly and said, “You didn’t need an emergency room for this, you have the flu, not Hodgkin’s.”
I felt like I had been slapped. Here I am nearly 40 years later and I can still remember how diminished I felt, how on the defensive I was. I didn’t know how to stand up for myself. I hadn’t mentioned the Hodgkin’s, I had just put it on the required form. He made me feel like a hypochondriac, and that feeling stayed with me for a long long time. I still included the Hodgkin’s in the medical history when I’d change doctors after moving, but I started being reticent to tell the doctors everything.
Fortunately, I didn’t have any major problems until I was older. But I could have. And when I did start having symptoms due to late effects, these many years later, after moving to Switzerland, I mostly kept quiet. Once I couldn’t ignore them, I stopped being quiet, but by then, most doctors were shrugging my unexplainable symptoms off as stress or whatever. They knew my medical history, but they didn’t know that what I was experiencing could be related to those past treatments. I was in physical pain, and had neck and muscle weakness and was scared, but they just ran their tests and found nothing other than some “unexplained” heart valve rigidity, and I was told my pain was in my head.
I was sent to a psychiatrist who gave me a prescription for Zoloft, and he sent me to a psychologist to talk about my imaginary pain.
Actually, the Zoloft did help. I had been so stressed out by the pain and weakness that I couldn’t function anymore. The anti-depressant helped me, made me feel stronger internally, strong enough to insist on more tests. So I was sent to yet another doctor, and finally found one that could explain my symptoms. They sent me to another specialist and I was told about Radiation Fibrosis, which was then confirmed by scans, and all of a sudden, my symptoms made sense. I stopped seeing the psychologist, started researching secondary late effects of cancer treatments, and found doctors/specialists who either knew about it or were willing to learn.
Most of all, I started talking to my doctors, opened up again about symptoms, etc. They in turn have helped me manage my pain, and are willing to help me watch for symptoms that may be early warning signs of new problems. My cardiologist explained the radiation damage to my heart, and is keeping a close eye on me. My GP listens to me and talks with other specialists and doesn’t just assume any new symptoms are in my head. They get checked out, if only for my peace of mind. I get not only a yearly mammogram, but also breast ultrasound and breast MRI every year, because breast cancer eventually affects 30% of women who had treatments like mine.
I feel safe, at least, as safe as I can be, because I know that anything “bad” like possible new cancers, will be caught early. I don’t have to worry about it, I just have to remain vigilant, like I was before. I pay attention to new symptoms, but I don’t focus on them, I just give a mental note to them and watch to see if they stick around. If they do, I mention them, if they don’t I just let it slide, but keep that mental note in case they come back.
And yet . . . . . sometimes, even now, I find myself wondering if I’m not just a wee bit hypochondriac. I know I’m not, not really, but when you know you need to be vigilant and make note of odd sensations and new aches and pains, it’s hard not to wonder if you’re overdoing it. When that happens, I just remind myself of what I said in the title of this post. There is no such thing as a hypochondriac cancer survivor.
After all, better safe than sorry.