In February 2008, my husband and I sat in an exam room at our doctor's office and got the news we were hoping we wouldn't get. MRIs and CT scans revealed several small tumours in my hubby's cerebellum and a considerably larger one on his right adrenal gland.
While we were aware that he likely had inherited a rare genetic disease, we had no idea that we were dealing with something of this magnitude. What was even more frightening was knowing that if I hadn't taken the initiative myself to research this disease, it's symptoms, routine screening protocol, and treatment, Frank's condition could have become much worse and potentially life threatening.
Within a matter of a couple weeks, we no longer had just a family doctor. Our team had expanded to include: an endocrinologist, a neurologist, and a urologist. Add to that multiple visits for consults, more MRIs and CT scans, blood, urine...it seemed overwhelming. Oh, and I was pregnant too. Lol!
Here are a few things that I learned along the way:
Trust your gut instinct
I knew Frank was sick. I just knew. So, I headed straight for Google. I made myself an expert. I read. I printed. I highlighted. I even put it all into a well organized binder that became Frank's book. I felt slightly neurotic, but in the end the book proved to be invaluable. Hence...
Make a book
Frank's book is a binder filled with plastic page protectors. It resembles a scrapbook of the un-fun kind. I have kept everything; my research, appointment cards, notes from every visit with every doctor, notes of Frank's symptoms and most importantly, test results. Those records are yours, and having your own copy is very important. Our book was imperative because more than once we would have a visit with a doctor and they couldn't find the results they called us in to talk about. Sad, I know, but true. Just do it. Time is way too valuable.
It's also good because sometimes the visits would get very stressful, and when that happened, my brain would just go to mush and I would forget everything I had to say and the questions we wanted to ask. With the book I could just review the questions and notes I had written out. I think it helped us feel like we were more active in the process too.
Be prepared to be an advocate
Serious health issues are scary and everyone deals with that fear differently. Some people just shut right down. Dealing with feeling like crap everyday is enough as it is. Frank and I always talked about how he wanted everything to be handled, and it was my job to enforce it. When you are sick you still know what you want, you just don't have the energy to make it happen.
Network
I looked for anyone else with this same disease and condition. Reading about how other people made it through, gave me lots of material for encouraging Frank. I also researched all of his doctors and talked to as many people as possible so that I could help Frank have faith in his team.
Suck it up
I was plenty scared and had lots of hard days, but I absolutely couldn't let it show. The best way you can help to preserve and improve the patient's condition is to remain positive and optimistic. Stress, negativity, and the patients concern for your well-being can wear them out even more. (I let the flood gates open right after Frank's surgery while he was in recovery. His surgeon came out to talk to us, and to tell us how everything went. Poor Dr. Pautler. I was a big pregnant mess for a good 10 minutes. Then, relief that we had made it past this obstacle took over. Lol!)
Supporting a loved one through a health crisis is definitely hard work, but it is also a great outlet for all of your anxieties. It also helps you feel like you are doing your part, and not just a helpless bystander.
I always teased Frank that I would make sure he would be presented with an opportunity to make it all up to me. And he sure did get it...20 hours of helping me when I was in labour! I made him work!
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