When I was diagnosed with breast cancer in 2012 that was the last thing, I expected. There was so much information to swallow. Overwhelmed with diagnosis, surgery dates, appointments, scans and too many decisions to make, I felt lost. I wish that I had a to-do list; reference material that laid out what I needed to prepare for. CancerCare Manitoba recently released, “My Cancer Notebook” which is a great resource, I wish that I had something like that. It allows you to log all your appointments and keep the mountains of info that you collect, in one place. CancerCare has published complementary resources along this line that help the patient navigate their “journey” from diagnosis to recovery.
These are some of the things I found to be beneficial after my cancer diagnosis:
– THE INTERNET IS NO LONGER YOUR FRIEND! Stay away from sites that are not credible, it will only confuse and scare you. Use sites like the Canadian Cancer Society (www.cancer.ca), CancerCare Manitoba (www.cancercaremanitoba.ca) or the Mayo Clinic site (www.mayoclinic.org). CancerCare has great resources, support groups, social workers and the Breast and Gyne Centre of Hope provides fantastic support. If you have questions, don’t google, go speak with the nurses at Hope.
– Bring a support person to all of your appointments and get them to record the appointment. I understand that some doctors are providing this service, but just in case, record or take notes. Why should you do this? During the appointment, you might fixate on one thing the doctor says and miss the rest of the conversation. You might hear something different and if you listen to a recording later on it might make more sense. It is simply because, it is all too much and far too emotional. Having some time to process, helps to understand what you heard.
– I really like to have my teeth cleaned, every 6 months. I am a bit anal about it. Get your teeth cleaned prior to the start of chemotherapy. Once chemotherapy for cancer begins, a dentist will not clean your teeth. Your immune system is low, the risk of infection is high, and once chemo begins, you have poison (literally) running through your veins and in your gums. For the duration of chemotherapy and up to six months after, you cannot get your teeth cleaned – so call your dentist!
– Biotene was a lifesaver for me. Biotene is a dental product that helps with dry mouth and helps to keep the natural environment of your mouth consistent during chemo treatments. Now this does not happen to everyone, but for me, my mouth turned into raw ground beef. I did not know about this product until my second or third round. Once I was told about Biotene, my mouth was much better. Mouthwash in my bathroom and the spray in my purse and I was good to go. Chemotherapy during cancer, effects people differently and you might not need this, but now you know.
– Your nose and chemotherapy might become enemies. Dryness and bleeding due to dryness may happen. This may be the first time you use a neti-pot, but it can help. Read the directions carefully, use distilled water – not tap water. Tap water could lead to infection. Alternatively, use a nasal mist to provide moisture. Did you know that keeping the environment of your nose healthy, helps prevent against infection. During chemotherapy, the risk of infection is higher, so keep your nose in good shape!
– Be ready. For breast cancer and a number of other cancers, you will lose your hair due to chemotherapy. I know, it’s only hair, it will grow back – blah, blah, blah. I thought that I would “rock the bald”. I sobbed when my hair fell out. It also hurt, it pulled on my scalp as it fell out and it was quite tender. At a certain point, it had to be shaved. My husband said to me, “we already have a cat and a dog that shed, so we need to do something about this”, he was joking, but it was true. I was happy that I purchased my wig prior to losing my hair, and I had some hats. I know that we lose heat through our head, but I did not realize how cold it was to sleep with no hair. I always wore a hat to bed; it was the only way to keep the chill away.
– Everyone will have something to say. It is their way of relating. It might take the form of a story about another person they know who has cancer, a friend of a friend, an aunt, an uncle twice removed – you get my drift. I have learned it is because people just don’t know what to say.How to react. They mean well, their intent no matter what their words are, is never to intentionally say stupid things. It will happen, guaranteed. There are many times I said to myself, “you have got to be kidding me, that was out loud”. My favorites were “oh my god, I am so tired” or “this is the worst flu, I can hardly get myself out of bed”, how about “you’re lucky you look good in short hair”! Really, did you just say that? I am going through chemotherapy and I have poison running through my body killing all the cells, good and bad. You think you feel sick, well let me tell you….breathe. No one means to compare what he or she is going through. It just comes out. It is relative to their life at that moment and people are not always thinking about what you are going through – shocker I know. Just an FYI, if you are creative you will write them all down and write a book – What people said to me while I had cancer, out loud.
I am certain there is more that I could tell you; unfortunately, chemotherapy has wiped out my brain cells. It will come to me and then I will write another blog on what I have missed. This is a good start, you are most likely already overwhelmed and in shock. It is a long haul. You will get through it. There will be happy endings, recurrences, sad endings and longer stories.
Regardless, live every day, to the fullest. Enjoy every moment. Call me if you have a question, I’ll do my best to help you.