Monday was World Cancer Day and in an effort to spread awareness, we’re going to spend this month covering important, helpful information about this horrific disease. Most of you know that my husband and I have been waging the war on cancer since September and believe me when I tell you it has been eye-opening, to say the least. Both of us had to learn what seemed like a year’s worth of information in a matter of months and we’re still learning. As a caregiver, this has been one of the most difficult, yet necessary things I’ve ever had to do. The downside to this, aside from the diagnosis of cancer, is the lack of knowledge I had stepping into a caregiver’s position so quickly.
Fortunately, we had others we could call on who were more knowledgeable than us about this process. I do realize however, that not everyone has that privilege. I also realize that there are some things we’re experiencing along this journey that no amount of advice or information could prepare us for mentally. Hence my reason for this blog post. I wanted to compile a list of things I felt were important to know or that I wish I had known prior to becoming a caregiver for my husband.
How long treatments would take – On chemo days we are in the hospital around 11- 12 hours for my husband’s treatment. Cancer is like a fingerprint, no two are alike and while you may have similar diagnoses, each person’s treatment course, even if it’s the same treatment, may take a different road.
Cancer and its treatments affect so much more than the physical body – I had a respect and adoration for my husband before this diagnosis but it has increased a million fold post diagnosis. He has taken every treatment like a champ because it…is…hard. Cancer is not an easy disease and the treatment, along with its side effects can sometimes be worse than the disease itself. Cancer takes over everything. It hits the bad cells AND the good cells. My husband gets extremely tired and I never realized how much he did around the house until he wasn’t able to do it. Also, some of chemo’s side effects don’t show themselves until months later. He didn’t begin experiencing neuropathy, the tingling of the fingers and feet, until months after beginning his treatment.
How hard you have to fight to be heard in the medical industry – My pet peeve! Patients should not have to fight to be heard. Healthcare is supposed to be there for the patient, not for medical staff to prove what they know. I know that when I became a health coach, I struggled with that. I just wanted to prove what I know so that you know that I know what I know. Healthcare is there for the patient and they need to feel like someone is there for them, listening, and cares about what’s going on in their lives. I am completely aware that more often than not, cancer is actually a result of the things we willingly and unwillingly consume and sometimes it is just genetic or environmental. There is some burden of responsibility the patient needs to shoulder, however the doctors’ responsibility is to help you move forward in healing. Unfortunately from what we’ve experienced, there is a lack of ability to communicate with compassion that prevents this from happening sometimes. If you read our story from the last two posts, you will see in my husband’s statements that the way your healthcare professional speaks to and communicates with you makes a huge difference.
The lack of patient advocacy – This goes hand in hand with number three. You have to be on the ball and present with the patient so that they know what’s going on. When my husband got the diagnosis and the doctors were talking to him, they never asked if he understood what they were saying and it was disheartening. While we were in California for his treatment the caregivers stayed in a place called The Fisher House and I would make my husband his food for the day in their beautiful kitchen because food and nutrition is another area of neglect when it comes to cancer treatment but that’s a post all its own! There was another man that would come in whose son had a brain tumor. He shared with me how he didn’t know what was going on with his son and he just did what the doctors told him to do. His son had THREE BIOPSIES of a tumor in his brain! The problem was, they didn’t get a sufficient sample the first two times. This poor man was in a state where he knew no one, trying to take care of his son. He knew nothing about brain tumors. He was just going by what the doctors said and I told him I would be his advocate. It takes a VILLAGE when you receive a diagnosis. If it weren’t for the people in our lives helping us research, explain things to us when we didn’t understand and being there for us when we didn’t have the energy, this would have been a thousand times harder. You need a village to help you because you are not an island and you and your family member can’t do it by yourself so don’t try to. It’s okay not to be okay – Prayer warriors are everything. Absolutely everything. I have this special friend and every morning she texts me a devotion and sends it to my husband as well because when you’re going through this, you need it!
You need to take care of yourself – If you don’t, you’re no good to the person you’re trying to take care of. It’s like being on a plane and not putting your oxygen mask on before you try to assist someone else.
Seeing a functional medicine doctor sooner – Emotionally, this would have made a world of difference. Grant it, the cancer probably would have been too far gone for this to have done any good had we saw him first but the mental clarity it would have provided would have been super helpful. But I’m glad things unfolded the way they did because we actually learned a whole lot more about my husband’s underlying conditions than we would have learned had we gone to the functional medicine doctor first. Sometimes you have to go through some things to really understand some things if that makes any sense.
Throughout this process, we learned that support of loved ones, whether they be friends, family, church family, makes a world of difference. Since the diagnosis, we were FLOORED by how much people truly cared about us! From the GoFundMe donations and comments to the texts, calls, emails, and prayers, it meant the world to us. So if you know someone going through this, please reach out to them. It doesn’t matter the distance or time, trust me, they will appreciate it more than you know.