Hi everyone,
This is going to be a bit different than my "normal blog." But I guess nothing I do is normal so here we go. I have made the very sad observation that so many of us are being touched by cancer ourselves or our loved ones. It's a case of not if, but when this disease will touch your life in a very personal way. One out of three will get cancer at least once in their lifetime which means this is something that we all are fighting against. I know we all hope and pray for a cure but in the meantime we have to fight the front lines. This is just a small guide for those who are starting this journey. I hope that maybe some of this will help you.
First, a bit of background on myself with this matter. I am a full time care giver for a cancer patient. I had a grandmother pass from cancer as well as a very good friend of mine. Childhood cancer ran rampant in our school hallways and one of my first memoires was of a little girl a few years older than me passing away from cancer. I know going through this is extremely difficult and sometimes, hopeless. There will days upon days of bad news and sickness and there will be days that you feel like you will never break the surface again. Then there will be days that are better. Every single person is different. Here are some tips that I wish someone would have told us, and some things that I have learned during this journey.
The first thing to remember is that EVERY SINGLE CASE IS DIFFERENT. You can have people going through the exact same cancer, stages, and treatment but that doesn't mean for an instant that they will react the same way. This is why cancer is so deadly, because it runs in an unpredictable manner that doesn't have a single cure all for the common person. Keeping that in mind, remember that people will have different side effects. Most people do not lose weight, most will gain it due to the chemo, but others will be down to skin and bones. Some people can work a full time job during treatment while other's can't leave their bed. Some will have hair loss, while others won't. And these are just some of the most obvious things. There will be things going on that you will never predict....which brings me too....
Never keep your mouth shut. If your loved one feels something unusual, please tell a nurse, doctor, caretaker or go to the ER. Even though you may think the cramp in your foot will go away it may actually be a blood clot. Your entire body is going through tremendous changes during treatment. Every good cell and every bad cell are being destroyed in order to treat the cancer. You treatment may cause internal bleeding, clots, heart attack, strokes, or even other cancers. Don't keep anything to yourself because you may be in big trouble, and your experience may also help another person later down the line.
Be prepared. If your loved one is able to come home after treatment keep a few things in mind. One, if you are able to have one bathroom designated for the person go through treatment, that is the best option. If you can't, make sure that the toilet, and the sink are scrubbed with bleach every time that they use the bathroom. When you do laundry for that person you will need to wash everything including sheets in hot water twice. Don't mix other people's laundry in with their loads. It's a good thing to stock up on bleach, Lysol, paper towels, laundry detergent, hand sanitizer, soaps, gloves, masks, band aids, tissues, toilet paper. Make sure everything is scent free because many people report a higher sensitivity to smells during treatment. Have a working thermometer, heating pad, ice packs, extra pillows, blankets, and toothbrushes. Your loved one will have to have one toothbrush per round of treatment and then throw it away. I recommend going to a dollar store and purchasing SOFT packages. Don't get anything fancy because you are going to go through a lot of them. Soft is very important because of how chemo can affect teeth.
When you are going to treatment with your loved one, bring a chemo survival kit for yourself, and the other person. Things you may want to include are: books, magazines, dark chocolate, pain reliever, pens, notebook, tissues, mints, snacks, drinks, phone charger, laptop, ipads, headphones, and anything to do with your hobby such as needle point. For the patient, bring the same plus anything that will make them feel at home like extra socks, comfy sweaters, or a stuffed animal. Make sure that you pay attention to what they may want such as mints, gum, or anything that will help with nausea. My friend used Star Bursts to help her, while others used papaya. ginger, and peppermint. Keep dark chocolate and green tea around which also helps sooth the belly. See if your hospital offers a dog program. Sometimes they will have a dog program within the hospital so a dog will be able to come visit. It is such a wonderful thing, it is free, takes a moment to ask, and will make your loved one smile. The weekly visits were something we all looked forward too. Ask about aroma therapy or other natural things you can do while you are going through treatment. It will help more than you can imagine.
Get help. Make sure you have someone to talk to if that means another person, social worker, therapist, minister, ect..... No one can go through this alone. This is life changing and arming yourself mentally will help you in this battle. You will have breakdowns, you will cry, be angry, hate the world, and question any faith you may have. That is normal. Allow yourself to feel what you want to feel, and allow your loved one to feel how they want to feel. Don't bottle these emotions because that will do more harm than good any day. Find what will be good for your loved one. Sometimes talk therapy will be best in a one on one situation. Sometimes it's a group setting or something like art classes, or make up classes. See what the hospital has to offer because most likely they will have some program, or know where you can get the information.
Do your research. Make sure you research the cancer and know what kind of treatment options there are and what the potential side effects are. I'm not saying become a doctor or expert, but you owe it to yourself and loved one to make yourself familiar with what is going on. The more you know, the more you can be prepared for questions you need to ask, and anything that you may need to do. There isn't ever just one doctor or one nurse you come into contact during treatment. There is a whole team and you need to be apart of that team as well. Take notes during every single appointment, check up, exam, and treatment. Find patterns that your loved one is going through. For example, if you see an hour and a half after their first treatment they want orange juice, write it down.
On that note, write down everything your loved one eats. The reason I recommend this is because the appetite for a caner patient is very unpredictable. I found that when I wrote down all she ate, how much, and around how much time it took I found it was easier to predict what she could or would eat. Your loved one will go through not wanting anything at all to eat, and then all of a sudden get a craving for a grilled cheese sandwich. By the time you make it then will no longer want it. Sometimes this list helped me avoid the work of getting the wanted item and not wasting a trip or money, plus making sure she had something she wanted to eat. This will happen, a lot, so please be patient with them. It will be frustrating because as soon as the words leave their lips of what they want, they could be changing their minds and no longer want those items. Take a deep breath because getting them to eat is sometimes a miracle.
Go online to find websites that you can get items for free for your loved ones. There is a lot out there for breast cancer which is nice but kind of stinks for others. Your team may know of sites you can go to get free items. I recommend Chemo Angels. It is site that will send your loved one gifts and goodies while they are going through treatment. It is anything from books to candy. It is wonderful and it is free. I loved seeing my friend's face when she got cards and gifts from a stranger who was thinking of her. Try American Cancer Society for information on free classes, items, and even transportation to and from treatment. Find anything you can about help with paying for treatments, it will be costly. See if your hospital has a patient navigator which can be very helpful with paper work, and options you didn't know were out there. They will be needed to help with anything to do with your job, and paper work that they may need.
There will be a lot of paper work involved so do your best to help your loved one out. If you can't, then please find someone who can. The chemo will make your loved one have something called chemo brain. They will not be able to remember things like they used to, and that may never go away. It is a very real thing that changes the way your loved one can retain information. Please make sure to help them with paperwork at the doctors office, with work, school, legal papers, and anything else that may pop up. Keep copies of everything in a folder for your loved one, or scan it into your computer and back it up. It's always good to have a paper trail if you need it.
Be their loved ones. This means make sure that you don't just talk about cancer. Talk about things in daily life, or a TV show, or anything they want to. Don't make every moment about the cancer. It is going to be hard enough, and always on their mind. They may want to talk about it, but respect them when they don't. On that note, let them cry, yell, scream, laugh, or just be still. There will be more emotions than we have names for going on and there is nothing wrong with anger and sadness, or even happiness and joy.
I know there are many more things that can be added to this list. Just remember assume nothing, ask questions, do your research, be prepared, and roll with the punches. No matter how prepared you are, reality will bring you something different. When that happens, don't be afraid to feel and lean on your support team as well as make sure your loved ones have the support and love that they need. there. No two situations so be patient with what is going on around you. Take care of yourself so you can take care of your loved one. Ask questions and never be afraid to seek a second or third opinion or option. Never stay silent and remember that you and your loved one are never alone.
To fighting the good fight!
