This is the letter Mary Kaitlyn wished someone who had “been there” had written to her when she was diagnosed with osteosarcoma. This is great advice for new patients and hospital visitors.
Dear Mary Kaitlyn,
First of all, let me tell you that I am very sorry to hear about your diagnosis.
I know that you are feeling a tidal wave of emotions; fear, hope, anxiety, worry, and sadness, just to name of few, not just for yourself, but for your loved ones.
If you are like me, you have let yourself mentally go somewhere no one should go. Maybe you have mentally planned your funeral, just in case you don’t make it and beat this thing. You have thought about what you want to say to each and every person you know and what they might say to you. You might be making a “bucket list” or a list of the things that you might never get to do. It’s hard to not go into a deep well of sad, negative thoughts when you get a cancer diagnosis. I don’t know if you’ve hit the bottom of it yet, but when you do, I encourage you to use all your strength, push hard, and propel yourself to the top.
This situation that you have found yourself in, no matter how grim or great the diagnosis, is only temporary. You will either beat this thing or you won’t. I’m sorry to be so blunt, but once you realize this, it helps put things in perspective. You won’t know the outcome until you are there, so I’d like to give you some advice that I wish someone would have given me to help you get from here to there.
One of the things that I struggled the most with was watching those around me deal with my diagnosis.
Some people wanted to pretend that I hadn’t been diagnosed. They would come to visit and act as if it were any other day or they might not come to visit at all because they refuse to see you in the hospital. Sometimes it is nice to talk to someone who treats you exactly like they treated you before your “D-Day”. Other times it can be very frustrating because you need to talk about it and they don’t want to acknowledge or hear it. Some people become obsessed with you and your diagnosis. They will call, email or text you information that they have found while doing research about you, your disease and your treatment. While it is good to have information, sometimes this can be overwhelming, especially when you don’t want to hear it. Some people will want to carry on and cry to use your situation to get themselves attention. They will tell anyone that will listen about you and your diagnosis and who upset they are about it. Some of them will drag people you don’t know to your hospital room. Some people will spoil you….rotten. They will give you anything you want, anytime you want it because of what you are going through. There isn’t anything wrong with any of the individuals as long as they realize and respect you and your wishes. There is good and bad that can come from anyone of these types of people, the problem lies in the personalities of the individuals involved.
As the patient, the one that has been diagnosed with cancer, you, your personality and your wishes take precedent over everyone and anyone else involved. This is important and I really, REALLY wish that someone would have told me this.
It seems like a no-brainer, but when you get parents, grandparents, aunts and uncles, friends, neighbors, co-workers, extended family and others involved, people lose sight of this very quickly. You need to speak up for yourself and what you want…not in a demanding, rude or ugly way, but you need to make your wishes known. If you don’t like your grandparents hovering over your bed hours at a time, you need to tell someone. If you don’t like your aunt crying in the corner and bringing all of her co-workers to the hospital to visit you, you need to say so. If you don’t like your neighbor bringing you his latest internet findings about your diagnosis, tell him. If you want to talk about your diagnosis, talk about it. If you don’t, then you need to tell everyone that you don’t want to talk about anything that has to do with cancer. If someone is smothering you with attention and gifts to a point that you feel like you can hardly breathe, you need to tell them to back off. If someone is refusing to visit because they want to pretend like you don’t have cancer and you want to see that person, you need to ask them to visit. If someone is visiting too long and too frequently or too brief and not frequently enough, you need to tell them.
They say that the road to hell is paved with good intentions. And all of the different people I just described probably all have good intentions, but this is your life, your diagnosis, your fight. You need to tell the people around you what you need and what you want so that they can do those things and help you.
My advice to you is to SPEAK UP! People have different personalities and deal with things differently. It’s one of the things that makes life interesting and great, but if you want to make this situation more tolerable, you need to stand up for yourself.
No one can read you mind and many people will try to follow the golden rule and do unto others as they want done unto them without factoring each person’s personalities and differences. Please speak up for yourself! It will make the journey a lot easier if everyone is on the same page. I really wish that someone had told me this when I was diagnosed. It would have made things more bearable. I hope that this helps you as much as it could have helped me.
Someone Who’s Been Where You Are
She is a 13-year cancer survivor. She was diagnosed with osteosarcoma at the top of her left femur in 2003 when she was four years old. Mary Kaitlyn goes to a survivor clinic every year so that doctors can monitor the long term side effects of the chemotherapy she did. She also visits her surgeon at least once a year. She has had a total of 18 surgeries related to her diagnosis. When doctors removed the tumor, they also removed the top third of her femur and did a limb salvage surgery. The prosthetic femur has caused some issues that require Mary Kaitlyn to walk with a cane, but she doesn’t let that slow her down. Mary Kaitlyn is the four-time state champion of the Georgia High School Sports Association Track and Field Championship in the Wheelchair 200 and 800, and the three-time state champion in the Wheelchair Shot Put event. Another of her passions is FFA (formerly known as Future Farmers of America). Mary Kaitlyn was out of eight individuals selected to serve over 40,000 Georgia FFA members as a State Officer. Mary Kaitlyn starts college Fall 2016 at Abraham Baldwin Agricultural College in Tifton, Georgia where she will be majoring in Agribusiness. She says she has had many people tell her that she is an inspiration to them because of everything that she has been through and the positive attitude she has had through it all. She wants them to know that they actually inspire her to do her best and make the most out of every opportunity.