After being diagnosed with any life-threatening illness, google becomes your best friend and your worst enemy. As patients, we have so many questions that sometimes feel silly posing to your doctor, so we seek our answers though the bearer of Armageddon like news, a search engine. Even though our questions seem specific to our own circumstances, thousands of responses are found and often because of the queries of others like you. Should these answers not be given by our own doctor? Why are we seeking peace of mind from our keyboard?
When I first heard the words “it’s cancer”, my mind started to spin and everything around me was a blur. I was sitting on a hospital bed with my partner beside me, while my five-month-old daughter quietly breastfed. There was no time for questions. My doctor gave me sympathetic eyes and placed her hand on my right knee. That moment was the clearest. That was the first time someone gave me the sad ‘you have cancer’ eyes. You never forget your first look of sympathy as a sick person.
After my doctor left, there was a steady stream of nurses and administration with a stack of papers for me to sign. I was given no time to think about options. I was told what needed to happen and that was it. I signed the papers agreeing to surgery. I signed the papers allowing future doctors to study my case. Not a single person explained that the likelihood of having a full hysterectomy five months post-partum was high. I was never given an option to preserve anything reproductive. I was never told I could. Dr Google though made it clear that it could have been an option. This was my biggest regret – not asking if I could freeze my eggs. I couldn’t say I would have done anything with that option, but at least I would have an option. My decision to have more children was decided for me in a split second.
Fast forward to my six rounds of chemotherapy. Before starting treatment, you attend a ‘chemo class’ with a group of other people also recently prescribed chemotherapy. Everyone’s treatment plan is different, as are their cancers. The session is very clinical and dare I say, boring. You’re given a lot of pamphlets and phone numbers to refer to. You receive a photocopied fact sheet on the specific drug(s) you will be given and quietly read the side effects to yourself, trying to act brave but internally screaming at the one that says hair loss. When you leave the session, you are not any more informed than when you got there, except now you can phonetically say ‘pac-li-tax-el’. Again, google has informed me more on what was to come.
A few things during treatment that I wish I was told about prior are:
It hurts more to lose your hair than any other part of treatment. Physically painful, not just emotionally. That super tight ponytail feeling when you take your hair down. Multiply that by 100. It was never discussed, aside from a quick blip on the drug fact sheet at ‘chemo class’.
If you’re lucky to not need a port, your veins will be basically useless for a few years post treatment. Two years post chemo, I needed an intravenous sedative at the dentist, and it was so difficult to find a viable vein that the nurse had to try between my toes. Having an IV set up there was an absolute delight.
Another thing that I wish I was told about prior is the emotional damage that having cancer causes. My doctor was great, but we never really talked about the mental impact of my diagnosis. It wasn’t until I had a full body crying meltdown in his waiting room one-year post treatment that he recognized I needed to talk to someone. You go into survival mode when you’re are in treatment. Life is broken down into remaining treatment sessions rather than weeks or days. You forget that that was a real possibility that you could have died. Once treatment is over, your brain starts functioning again. The fear is magnified, and every pain is exaggerated. In your mind, the cancer is back and worse than before. I’ve learned that this feeling is common, and I wish my doctor(s) would have checked in more often or told me to feel my fears in the moment.
Lastly, I wish my doctor told me about all the amazing resources there are for cancer patients and their families. Through my own research, I found an amazing foundation, Wellspring, with whom I still have a relation and volunteer at whenever possible. I also was able to spend time with my family post treatment at a donated cottage through, Cottage Dreams. There are so many different programs available to patients, survivors, and caregivers that help with our healing that not many people know about. These all became very important to my family and me.
Cancer is a scary diagnosis but when we know what we are going to experience beforehand, it makes it almost bearable.