Over the years, I’ve offered advice to dozens of friends, relatives, and strangers about coping with a cancer diagnosis and the related challenges but I’ve never published it. I hope this page can provide some guidance from those of us who have been in your shoes.
FREQUENTLY ASKED QUESTIONS
What is your best overall advice?
Have hope/stay positive
Attitude can make a big difference. As childhood cancer survivor Emily suggested, “Make sure you keep a positive spirit and don’t feel sorry for yourself. Enjoy life!” Of course, there will be bad days, but try to find something good in every day. Kelsey, a cancer survivor, said, “Don't give up hope. The world keeps turning and life goes on - even on your worst days.”
Find someone to talk to, especially others in similar situations
Cancer treatment is extremely frustrating and overwhelming, so it’s helpful to find someone willing to listen. It can be extremely helpful to talk to other patients who understand what you’re going through. Alice, a cancer survivor, also pointed out that, while the doctors have medical advice, the other patients have the practical advice. This support goes two ways; Sydney, whose mom had cancer, added “Always be there for someone going through this situation. Be positive and uplifting. It goes a long way.”
Ask any and all questions
“No question is unimportant because it’s about you,” explained Kim, a breast cancer survivor. You know your body best, so don’t be afraid to advocate for yourself. If something doesn’t seem right, speak up. The nurses and doctors are caring for multiple patients, so sometimes things get overlooked.
Take each day one step at a time
Cancer can be unpredictable, and treatment will never go 100% according to plan. Looking too far ahead can be overwhelming because of all the unknowns. “Have patience and don’t expect a textbook solution to an individual problem,” explained Jennifer, whose son had leukemia.
Don’t be afraid to ask for help
Cancer treatment is exhausting, not just for the patient but also for the whole family. Cheryl, whose daughter had leukemia, explained, “Don’t be afraid to ask for help when you need it, and be specific. Most people will do just about anything to help, but if they’ve never been in a like situation, they don’t know what you may need.”
Take time to recharge
Barbara, a cancer mom said, “Allow yourself to sleep, rest, heal, have fun times, and eat good foods. Nourish yourself. I always think of the airline rules about putting your own oxygen mask on first before putting your child's on. Cancer families need to remember this because it is so easy to give up everything to care for your child.” When Tracey’s daughter was in the hospital for treatment, she recalled, “Once a week, when the kids on the floor were asleep, the parents would get together at a restaurant that was on the corner by the hospital for dinner. The nurses knew where we were and had our numbers. It was the most wonderful two-hour break.”
Attitude can make a big difference. As childhood cancer survivor Emily suggested, “Make sure you keep a positive spirit and don’t feel sorry for yourself. Enjoy life!” Of course, there will be bad days, but try to find something good in every day. Kelsey, a cancer survivor, said, “Don't give up hope. The world keeps turning and life goes on - even on your worst days.”
Find someone to talk to, especially others in similar situations
Cancer treatment is extremely frustrating and overwhelming, so it’s helpful to find someone willing to listen. It can be extremely helpful to talk to other patients who understand what you’re going through. Alice, a cancer survivor, also pointed out that, while the doctors have medical advice, the other patients have the practical advice. This support goes two ways; Sydney, whose mom had cancer, added “Always be there for someone going through this situation. Be positive and uplifting. It goes a long way.”
Ask any and all questions
“No question is unimportant because it’s about you,” explained Kim, a breast cancer survivor. You know your body best, so don’t be afraid to advocate for yourself. If something doesn’t seem right, speak up. The nurses and doctors are caring for multiple patients, so sometimes things get overlooked.
Take each day one step at a time
Cancer can be unpredictable, and treatment will never go 100% according to plan. Looking too far ahead can be overwhelming because of all the unknowns. “Have patience and don’t expect a textbook solution to an individual problem,” explained Jennifer, whose son had leukemia.
Don’t be afraid to ask for help
Cancer treatment is exhausting, not just for the patient but also for the whole family. Cheryl, whose daughter had leukemia, explained, “Don’t be afraid to ask for help when you need it, and be specific. Most people will do just about anything to help, but if they’ve never been in a like situation, they don’t know what you may need.”
Take time to recharge
Barbara, a cancer mom said, “Allow yourself to sleep, rest, heal, have fun times, and eat good foods. Nourish yourself. I always think of the airline rules about putting your own oxygen mask on first before putting your child's on. Cancer families need to remember this because it is so easy to give up everything to care for your child.” When Tracey’s daughter was in the hospital for treatment, she recalled, “Once a week, when the kids on the floor were asleep, the parents would get together at a restaurant that was on the corner by the hospital for dinner. The nurses knew where we were and had our numbers. It was the most wonderful two-hour break.”
Cancer is a new normal
It’s impossible to go back to life before cancer. However, this can be difficult for other people to understand. When Joy’s son came home from the hospital after a bone marrow transplant, life was not back to normal even though he was home. “It’s hard to tell people that you don’t want to have play dates,” she said, but she needed to protect her son from germs that would land him back in the hospital. Cancer is a life-changing experience for the whole family, but Barbara suggested, “Find what brings you joy and keep it in your life.” I continued traveling and hiking whenever possible. Your new normal shouldn’t exclude the joy from your old normal. |
How can I help a patient/Family?
When appointments last all day and medications are causing nasty side effects, even the smallest of chores can feel like trying to move a mountain. What can you do? Helping someone out doesn’t have to be a hassle – you can offer something you enjoy or are good at. Here are a few ideas to get you started, but the options are really endless.
Deliver a meal
This is one of the most common ways to help. Finding the time to shop for ingredients and actually prepare a meal can be a challenge during treatment, so coming home to food on the table can be a huge relief. You don’t need to make something complicated – patients and families alike agree that anything is appreciated! For more ideas about delivering dinner, see Delivering dinner to a family in need.
Keep up with the yardwork
After an exhausting day of appointments, yard work is the last thing most patients want to do. Offer to help out with whatever is seasonally appropriate – mowing the lawn, raking leaves, or shoveling snow. Patients with suppressed immune systems aren’t supposed to mow the lawn or rake leaves without wearing a heavy-duty mask because of the potential for spraying up mold spores. This makes these chores even less appealing!
Clean the house
Cleanliness is extremely important for suppressed immune systems. Patients and their families may not have the time or energy to clean. One family member said cleaning was one of the most helpful things people did during her mom’s treatment.
Housesit
If the patient has pets, they may not be getting as much attention as they should. We all love our pets and we feel better knowing they’re well taken care of. Do you live nearby? Offer to let their dog out, or even better, take him for a walk! It’s exercise for you and fun for the dog! When she was at the hospital with her daughter, Cheryl also found it helpful when friends could be at her house when deliveries or services required someone to be there.
Offer a ride
Does the patient have kids or siblings? They may need rides to their activities during appointments. My parents tried their best to make sure that my siblings could continue with all of their normal sports and activities during my treatment, but that would not have been possible without rides from friends, neighbors and teammates. Sometimes the patient may need a ride to/from an appointment as well.
This list is only the beginning! If you think of a way you can help, it never hurts to offer.
Deliver a meal
This is one of the most common ways to help. Finding the time to shop for ingredients and actually prepare a meal can be a challenge during treatment, so coming home to food on the table can be a huge relief. You don’t need to make something complicated – patients and families alike agree that anything is appreciated! For more ideas about delivering dinner, see Delivering dinner to a family in need.
Keep up with the yardwork
After an exhausting day of appointments, yard work is the last thing most patients want to do. Offer to help out with whatever is seasonally appropriate – mowing the lawn, raking leaves, or shoveling snow. Patients with suppressed immune systems aren’t supposed to mow the lawn or rake leaves without wearing a heavy-duty mask because of the potential for spraying up mold spores. This makes these chores even less appealing!
Clean the house
Cleanliness is extremely important for suppressed immune systems. Patients and their families may not have the time or energy to clean. One family member said cleaning was one of the most helpful things people did during her mom’s treatment.
Housesit
If the patient has pets, they may not be getting as much attention as they should. We all love our pets and we feel better knowing they’re well taken care of. Do you live nearby? Offer to let their dog out, or even better, take him for a walk! It’s exercise for you and fun for the dog! When she was at the hospital with her daughter, Cheryl also found it helpful when friends could be at her house when deliveries or services required someone to be there.
Offer a ride
Does the patient have kids or siblings? They may need rides to their activities during appointments. My parents tried their best to make sure that my siblings could continue with all of their normal sports and activities during my treatment, but that would not have been possible without rides from friends, neighbors and teammates. Sometimes the patient may need a ride to/from an appointment as well.
This list is only the beginning! If you think of a way you can help, it never hurts to offer.
How can I show support from a distance?
If you live far away from a patient, it may seem like there is nothing you can do to help. However, that is far from the case! There are many ways you can show a patient you’re thinking about him or her, no matter how many miles are between you.
Give blood
I lost count of the number of units of blood I received during my five treatments. There were red blood cells, platelets, and antibodies, all of which were critical to my recovery. After a while, it was hard not to be self-conscious of how much blood I was using up, knowing there are frequently shortages around the country. Even if you’re not the same blood type as the patient, let them know that you gave blood to help other patients. As a blood cancer survivor, I’m not allowed to donate so I try to give back by encouraging others to donate. “Donating blood made me feel useful,” explained one long-distance friend of a patient. Find a Red Cross blood drive near you.
Join the bone marrow registry
This is a big one, especially if the patient is receiving a bone marrow transplant. I was lucky enough to have a perfectly matched sibling, but not all patients are so fortunate. Bone marrow is much more difficult to match than blood, so the more people who register, the better a patient’s chances are at finding a match. You’re unlikely to match the patient you know, but you could save someone else’s life. Be The Match looks for patients between the ages of 18 and 44 who are in good health and all it takes to join is a cheek swab. It may seem like you’ll never get picked, but one of my friends was called as a potential match within 6 months of registering. Sign up or learn more about Be The Match!
Give blood
I lost count of the number of units of blood I received during my five treatments. There were red blood cells, platelets, and antibodies, all of which were critical to my recovery. After a while, it was hard not to be self-conscious of how much blood I was using up, knowing there are frequently shortages around the country. Even if you’re not the same blood type as the patient, let them know that you gave blood to help other patients. As a blood cancer survivor, I’m not allowed to donate so I try to give back by encouraging others to donate. “Donating blood made me feel useful,” explained one long-distance friend of a patient. Find a Red Cross blood drive near you.
Join the bone marrow registry
This is a big one, especially if the patient is receiving a bone marrow transplant. I was lucky enough to have a perfectly matched sibling, but not all patients are so fortunate. Bone marrow is much more difficult to match than blood, so the more people who register, the better a patient’s chances are at finding a match. You’re unlikely to match the patient you know, but you could save someone else’s life. Be The Match looks for patients between the ages of 18 and 44 who are in good health and all it takes to join is a cheek swab. It may seem like you’ll never get picked, but one of my friends was called as a potential match within 6 months of registering. Sign up or learn more about Be The Match!
Donate to an organization that is important to the patient
The most intense part of my treatment fell around the holidays, so many people wanted to make donations to organizations that had helped me and my family. I found these gestures very thoughtful. Some patients may not want to be showered in gifts and food and would rather you send your support to others, no matter what time of year. Amanda, a friend of a leukemia patient, said she supported her friend during treatment by participating in fundraising runs for her friend’s favorite cancer organizations. |
Share the patient’s story
This definitely depends on the patient! Some patients really appreciate when you add their names to your church’s prayer list or share their Facebook posts to spread awareness. I kept a blog detailing my treatment journey, and I loved when people would share it with others who may not know me. Most people don’t have any idea what it’s like to be a teen with cancer, and I wanted to get my story out there. When strangers would contact me about how inspiring a post was or how much they learned from my story, it was always an amazing feeling.
If sending meals and care packages aren’t your style, showing indirect support is a great way to let patients know you are thinking of them and helping others in their honor.
This definitely depends on the patient! Some patients really appreciate when you add their names to your church’s prayer list or share their Facebook posts to spread awareness. I kept a blog detailing my treatment journey, and I loved when people would share it with others who may not know me. Most people don’t have any idea what it’s like to be a teen with cancer, and I wanted to get my story out there. When strangers would contact me about how inspiring a post was or how much they learned from my story, it was always an amazing feeling.
If sending meals and care packages aren’t your style, showing indirect support is a great way to let patients know you are thinking of them and helping others in their honor.
What should I put in a care package?
If you live far away, sending a care package can be the perfect way to show your support to someone going through a tough time. While it’s difficult to offer specific advice without knowing the individual you are shopping for, I have a few ideas.
Entertainment
Patients spent a lot of time waiting for appointments, and some have lengthy hospitalizations as well. Games, magazines, movies and books are great gifts because they are good ways for the patient to stay occupied. Most patients and family members mentioned books, magazines and other entertainment were must-haves on their packing list for the hospital. When picking games, I recommend ones that only require two people (though it’s okay if they can also be played with more), because most of the time there will only be one person staying with the patient. My hospital favorite was Spot It because it could be played with as many or as few people as we had available, no matter what age. iTunes or Google Play gift cards can also be helpful if the person has a smart phone or tablet because there are so many apps available. If you’re unsure about a patient’s taste in entertainment, you can always write your Netflix or TV show suggestions in your card and let them decide if they’re interested.
Food
When I was on treatment, I was usually starving from steroids or not hungry from chemo. I either really wanted food, or I would only eat food if it was really appealing. Different patients may have different restrictions, but, in general, they’ll be happy to see their favorite candy or other snack food, especially if they’re in the hospital. Hospital food is just not that great, so on some days, candy was my best source of calories. There were times that my doctors were completely fine with that – I just needed calories.
Entertainment
Patients spent a lot of time waiting for appointments, and some have lengthy hospitalizations as well. Games, magazines, movies and books are great gifts because they are good ways for the patient to stay occupied. Most patients and family members mentioned books, magazines and other entertainment were must-haves on their packing list for the hospital. When picking games, I recommend ones that only require two people (though it’s okay if they can also be played with more), because most of the time there will only be one person staying with the patient. My hospital favorite was Spot It because it could be played with as many or as few people as we had available, no matter what age. iTunes or Google Play gift cards can also be helpful if the person has a smart phone or tablet because there are so many apps available. If you’re unsure about a patient’s taste in entertainment, you can always write your Netflix or TV show suggestions in your card and let them decide if they’re interested.
Food
When I was on treatment, I was usually starving from steroids or not hungry from chemo. I either really wanted food, or I would only eat food if it was really appealing. Different patients may have different restrictions, but, in general, they’ll be happy to see their favorite candy or other snack food, especially if they’re in the hospital. Hospital food is just not that great, so on some days, candy was my best source of calories. There were times that my doctors were completely fine with that – I just needed calories.
Decorations
If someone is in the hospital for a while, decorations can make the room feel less like the hospital and more like home. I used window clings and repositionable wall decorations to brighten up my room since they don’t damage the walls or windows. When her daughter was in the hospital for leukemia treatments, Cheryl said she was allowed to use painter’s tape and 3M removable wall hooks for hanging decorations. Decorating made my month-long stay, including Christmas and New Year’s Eve, much more bearable because I got my whole room in the holiday spirit. Some of my favorite decorations were pictures. I’d tape them up in my room, and I loved when people would send me more to add to my wall. They also became a talking point with the nurses. I found that it was nice to have a constant reminder of all the friends and family who were supporting me. |
For the family
The whole family is affected by a cancer diagnosis. If the patient has siblings, include something for them. Siblings are often overlooked, but they are affected too, especially if the parents need to dedicate a lot of time to the patient. During her daughter’s treatment, Tracey found it very helpful that their family and friends treated all of her children the same. If one of them got a gift, they all got a gift so no one was ever left out. Gas or grocery gift cards or a family game could also be nice additions.
In the end, it’s the thought that counts according to many cancer survivors, including Alice and Kim. Alice always enjoyed little silly things that made her smile, and Kim loved cards and personal notes – “I never got tired of love.”
The whole family is affected by a cancer diagnosis. If the patient has siblings, include something for them. Siblings are often overlooked, but they are affected too, especially if the parents need to dedicate a lot of time to the patient. During her daughter’s treatment, Tracey found it very helpful that their family and friends treated all of her children the same. If one of them got a gift, they all got a gift so no one was ever left out. Gas or grocery gift cards or a family game could also be nice additions.
In the end, it’s the thought that counts according to many cancer survivors, including Alice and Kim. Alice always enjoyed little silly things that made her smile, and Kim loved cards and personal notes – “I never got tired of love.”
How can I stay busy in the hospital?
The hospital is incredibly boring and there’s no getting around that. Some hospital stays are planned, so you have time to grab games or other entertainment, but sometimes you have to make do with what’s available.
Stay active
It’s incredibly important to get up and move around as much as possible. It’s easy to lose a lot of muscle quickly by staying in bed all day, but even a lap or two a day can make a big difference. During one of my long hospital stays, we used our stride length to calculate how many laps were equal to a mile (15 in the Bloomberg building at Johns Hopkins). Some days, I felt awful and only walked half a lap; other days, I walked three miles. To mix it up, you can also leave the floor and do some stairs or walk around the hospital if your nurse is okay with it. I suggest going after 8pm when it’s empty – fewer people means fewer germs. Ask your nurses and doctors about their favorite spots in the hospital. Even during my fifth treatment, I was still discovering new places.
Stay active
It’s incredibly important to get up and move around as much as possible. It’s easy to lose a lot of muscle quickly by staying in bed all day, but even a lap or two a day can make a big difference. During one of my long hospital stays, we used our stride length to calculate how many laps were equal to a mile (15 in the Bloomberg building at Johns Hopkins). Some days, I felt awful and only walked half a lap; other days, I walked three miles. To mix it up, you can also leave the floor and do some stairs or walk around the hospital if your nurse is okay with it. I suggest going after 8pm when it’s empty – fewer people means fewer germs. Ask your nurses and doctors about their favorite spots in the hospital. Even during my fifth treatment, I was still discovering new places.
Invite visitors
As long as your friends aren’t sick and are willing to use hand sanitizer, there is usually no reason that you can’t have visitors. Seeing friends is a great break in the monotony of days in the hospital. Have your friends call before they come to make sure you’re feeling up to it, and don’t forget that it’s okay to tell them when you’re tired and need a nap. Keep games on hand If you have a hospital bag that always stays packed, keep a few games in it. Puzzle books, decks of cards, Uno, Spot It, and Bananagrams are all small and easy to keep tucked in your bag. Even if you don’t think you’ll be feeling well enough for games, it’s good to have the option. Even if you’re alone in the hospital, sometimes the nurses are willing to play a hand, or you can play when people come to visit. |
Talk to Child Life
If you’re at a bigger hospital in a pediatric unit, there is probably a child life specialist available. My hospital had playrooms stocked with games and movies, so I had endless entertainment options. Child Life specialists and volunteers were also available to chat or play games. Additionally, there were regular activities, like Bingo every Wednesday and theme nights for certain holidays. Keep your mind busy If puzzle books aren’t for you, find another way to keep yourself busy. I took classes part-time. Kim, a breast cancer survivor, made lists of things she would rather be doing. Start planning a trip or an end-of-treatment party. Not only will it keep your mind busy, it will give you something to look forward to. Find a new series Whether you like to read or watch television, there’s no better time to start a new series than when you’re stuck in the hospital. I received lots of entertainment recommendations in cards and my countdown chain [link to post], so I was never bored. When I felt really sick, it was hard to focus enough to read, but watching comedies kept me smiling. |
What should I pack for the hospital?
Packing for the hospital is nothing like packing for a vacation. Of course you need clothes, but there are additional items that can make a hospital stay significantly more comfortable.
Foam pad
Patient beds are usually comfortable enough, but anyone staying overnight with the patient will probably be sleeping on a fold-out chair. These aren’t particularly comfortable, but a foam pad makes this sleeping situation much more tolerable. These pads are absolutely worth the 15 dollars – sleep is hard enough to come by in the hospital even when you’re comfortable. Room decorations Decorations can be simple like pictures, or larger, like a 100-day countdown chain for bone marrow transplants (See "Chains of Love," below). I enjoyed having pictures of great memories that could always make me smile. My pictures were also good talking points with the hospital staff. When her son was in the hospital, Barbara decorated the room with photos of friends holding encouraging signs. Cheryl, another cancer mom, used painter’s tape and 3M removable hooks to hang decorations in her daughter’s room. Different hospitals have different rules about decorating, but some also allow removable wall or window clings. |
Comfortable clothes
Many people prefer wearing their own clothes instead of hospital gowns. Keep in mind any lines that need to be accessed. I wore a lot of tank tops and cardigans because they provided easy access to my lines while still keeping me warm.
Many people prefer wearing their own clothes instead of hospital gowns. Keep in mind any lines that need to be accessed. I wore a lot of tank tops and cardigans because they provided easy access to my lines while still keeping me warm.
Entertainment
Entertainment is key to a good hospital packing list, but there are quite a few options. If you have electronics, make sure you pack all of the necessary chargers. It’s also great to have games, cards, books, and other activities. For more ideas, see “How can I stay busy in the hospital?” above. Food Hospital food leaves a lot to be desired, but most units have a refrigerator and microwave for patient/family use. I always took a few servings of my favorite meals from home. Cookies, crackers, candy, popcorn, soup, and other snacks are great to have around. |
Pillowcase/bedding
Hospital pillowcases are usually too thin to make the plastic pillows comfortable. I liked to bring a pillowcase from home that’s softer and more fun, though using two hospital pillowcases instead of one worked if I forgot. Some people bring their own sheets, and Emily, a leukemia survivor, always made sure she had a comfortable blanket during her inpatient stays. In addition to sheets, blankets, and pillows, Cheryl and her daughter also brought their own towels, which were much larger and softer than hospital towels.
Toiletries
The hospital will provide soap and a toothbrush if you forget them, but using your normal products is one way to maintain a sense of normalcy. Especially for long stays, you’ll want to be as comfortable as possible. One patient always took her makeup, others took their soap/shampoo, and another family went a step further and took toilet paper.
Storage
Hospital rooms aren’t always set up for long stays. When they knew their kids would be in for long stays, Cheryl and Barbara packed some of their essentials in plastic three-drawer chests. These helped keep things organized and reduced the packing/unpacking. They fit well under the sink or next to the bed.
Nobody wants to be in the hospital, but making it a little homier can make the time a little more bearable. No matter what’s on their packing lists, many families keep overnight bags packed just in case. If a patient gets a fever while immunosuppressed, having stuff together makes it easier to get to the emergency room quickly.
Hospital pillowcases are usually too thin to make the plastic pillows comfortable. I liked to bring a pillowcase from home that’s softer and more fun, though using two hospital pillowcases instead of one worked if I forgot. Some people bring their own sheets, and Emily, a leukemia survivor, always made sure she had a comfortable blanket during her inpatient stays. In addition to sheets, blankets, and pillows, Cheryl and her daughter also brought their own towels, which were much larger and softer than hospital towels.
Toiletries
The hospital will provide soap and a toothbrush if you forget them, but using your normal products is one way to maintain a sense of normalcy. Especially for long stays, you’ll want to be as comfortable as possible. One patient always took her makeup, others took their soap/shampoo, and another family went a step further and took toilet paper.
Storage
Hospital rooms aren’t always set up for long stays. When they knew their kids would be in for long stays, Cheryl and Barbara packed some of their essentials in plastic three-drawer chests. These helped keep things organized and reduced the packing/unpacking. They fit well under the sink or next to the bed.
Nobody wants to be in the hospital, but making it a little homier can make the time a little more bearable. No matter what’s on their packing lists, many families keep overnight bags packed just in case. If a patient gets a fever while immunosuppressed, having stuff together makes it easier to get to the emergency room quickly.
What's the best way to deal with hair loss?
Dealing with hair loss is hard, especially in a society where hair is often seen as such a big part of your identity. Until you lose your hair, it’s a lot harder for people to see you and immediately know that you’re sick.
Why do you lose your hair?
Chemo and radiation kill fast-growing cells, like hair follicles, so the hair stops growing and becomes weak. When this weak section of hair reaches the scalp about 2-4 weeks after certain treatments, the hair breaks off. You may also lose eyebrows, eyelashes, and other hair.
To shave or not to shave
Some people, like Emily, a leukemia survivor, shaved their heads right away before they lost their hair from treatment. I’ve gone both ways. I always cut it shorter so it wasn’t as messy, but during my first treatment, I refused to shave it all off and let it run its course. More recently, I found that choosing when to shave it gave me some control over the situation, so I was much less upset about it. Once I started noticing hair all over my pillow, I shaved it all off.
What (not) to say
Everyone deals with hair loss differently. I got really tired of hearing, “It’s just hair, it’ll grow back.” I knew people meant well, but I always wanted to say, “If it’s not a big deal, shave your head and see how you feel.” However, other survivors, like Kelsey, found this reminder helpful. Kelsey’s mom reminded her it was just hair all the time. “That’s stuck with me even now as I dye and chop my hair somehow different every year,” she explained. Emily hated people telling her she looked like a boy.
Rocking the bald (or not)
I never used to leave the house without a hat or bandana. As I went to camp and met other patients, I realized that lots of people weren’t ashamed of their bald heads and I didn’t need to be either. I wore hats in the winter because my head was always freezing without hair, but eventually I was confident enough to walk around in public with nothing on my head. Even though I didn’t mind being bald, I decided to get a wig for special occasions like weddings. My wig allowed me to get my hair done with the other bridesmaids and attract less attention to my illness so I could focus on enjoying the event. I’ve never dyed my hair, so seeing myself with different hair colors while wig shopping was a lot of fun.
Why do you lose your hair?
Chemo and radiation kill fast-growing cells, like hair follicles, so the hair stops growing and becomes weak. When this weak section of hair reaches the scalp about 2-4 weeks after certain treatments, the hair breaks off. You may also lose eyebrows, eyelashes, and other hair.
To shave or not to shave
Some people, like Emily, a leukemia survivor, shaved their heads right away before they lost their hair from treatment. I’ve gone both ways. I always cut it shorter so it wasn’t as messy, but during my first treatment, I refused to shave it all off and let it run its course. More recently, I found that choosing when to shave it gave me some control over the situation, so I was much less upset about it. Once I started noticing hair all over my pillow, I shaved it all off.
What (not) to say
Everyone deals with hair loss differently. I got really tired of hearing, “It’s just hair, it’ll grow back.” I knew people meant well, but I always wanted to say, “If it’s not a big deal, shave your head and see how you feel.” However, other survivors, like Kelsey, found this reminder helpful. Kelsey’s mom reminded her it was just hair all the time. “That’s stuck with me even now as I dye and chop my hair somehow different every year,” she explained. Emily hated people telling her she looked like a boy.
Rocking the bald (or not)
I never used to leave the house without a hat or bandana. As I went to camp and met other patients, I realized that lots of people weren’t ashamed of their bald heads and I didn’t need to be either. I wore hats in the winter because my head was always freezing without hair, but eventually I was confident enough to walk around in public with nothing on my head. Even though I didn’t mind being bald, I decided to get a wig for special occasions like weddings. My wig allowed me to get my hair done with the other bridesmaids and attract less attention to my illness so I could focus on enjoying the event. I’ve never dyed my hair, so seeing myself with different hair colors while wig shopping was a lot of fun.
How can I show continued support to a patient/family?
When I was first diagnosed, the amount of support I received from friends, family members, neighbors, and even strangers was overwhelming. However, that high level of support faded quickly. This is absolutely understandable – of course I don’t expect anyone to send me a care package every few months.
Check in if the patient doesn’t reach out
Right after diagnosis, it’s easy to get caught up in sorting everything out, so it isn’t until later that things really hit you. For example, my second diagnosis was a month before the start of my sophomore year of college. I knew I was going to have to take some time off from school, but I was so busy with my first few weeks of treatment that it didn’t hit me until the day I was supposed to be moving into my new dorm. By that point, I had more time on my hands, which meant I was scrolling through my Facebook news feed only to find it filled with pictures of newly decorated rooms while I sat in the hospital. That was when I really wanted someone to talk to. I didn’t necessarily want to talk about missing school, I just wanted a distraction. Luckily, some of my friends texted me to check in. Having a shoulder to lean on is one of the most helpful things for patients and their family members.
Check in if the patient doesn’t reach out
Right after diagnosis, it’s easy to get caught up in sorting everything out, so it isn’t until later that things really hit you. For example, my second diagnosis was a month before the start of my sophomore year of college. I knew I was going to have to take some time off from school, but I was so busy with my first few weeks of treatment that it didn’t hit me until the day I was supposed to be moving into my new dorm. By that point, I had more time on my hands, which meant I was scrolling through my Facebook news feed only to find it filled with pictures of newly decorated rooms while I sat in the hospital. That was when I really wanted someone to talk to. I didn’t necessarily want to talk about missing school, I just wanted a distraction. Luckily, some of my friends texted me to check in. Having a shoulder to lean on is one of the most helpful things for patients and their family members.
Visit regularly
If you live nearby, visiting is a great way to keep a patient busy. I didn’t always have the energy to go out and do things, but my days went by faster if someone came to visit. We would catch up, play games, or enjoy a meal. Parents like Cheryl, whose daughter had leukemia, also appreciated visitors because they provided her a break during which she could go home and spend time with her son or catch up on sleep. When you visit, if you’re uncomfortable talking about the person’s illness, don’t bring it up. Chances are, the patient talks about it plenty with doctors and talking with you is a chance for a normal conversation. Bring a meal Even if the patient only set up a meal calendar for the beginning of treatment, you can still offer to bring a meal later! After a long day of appointments, coming home to a meal is greatly appreciated. |
Don’t worry about saying the “wrong thing”
Remember, it’s the thought that counts. “At the root of things nothing's really changed. Your best friend is still your best friend and she still needs you to be her best friend even though she has cancer,” Casey, a friend of a patient, explained. So often, after people send a meal or a card at the beginning of treatment, they completely disappear. Sometimes they reappear when the patient is healthy, and sometimes they don’t. Either way, it’s awkward and frustrating. I know that not everyone wants to talk about being sick, but, really, patients are people too. They want some normal conversation! Saying the “wrong thing” is much better than saying nothing because at least it shows you care.
The biggest thing to remember is that treatment is a long journey and it doesn’t really get any easier on the patient. The wave of support recedes and leaves only the closest and most supportive of friends. Be one of them and the patient will always remember that you were there.
Remember, it’s the thought that counts. “At the root of things nothing's really changed. Your best friend is still your best friend and she still needs you to be her best friend even though she has cancer,” Casey, a friend of a patient, explained. So often, after people send a meal or a card at the beginning of treatment, they completely disappear. Sometimes they reappear when the patient is healthy, and sometimes they don’t. Either way, it’s awkward and frustrating. I know that not everyone wants to talk about being sick, but, really, patients are people too. They want some normal conversation! Saying the “wrong thing” is much better than saying nothing because at least it shows you care.
The biggest thing to remember is that treatment is a long journey and it doesn’t really get any easier on the patient. The wave of support recedes and leaves only the closest and most supportive of friends. Be one of them and the patient will always remember that you were there.
How can I support the siblings of a patient?
Most people don’t realize how hard a cancer diagnosis is on the whole family, especially the siblings. Some siblings may be too young to really understand why their parents aren’t around as much or why their sick sibling is getting all the attention and doesn’t have enough energy to play. Patients need support, but it’s important to support the siblings too. After all, the siblings are the ones bored at home, not getting much attention while their sick sibling is at the doctor.
Expand your care package
Patients are often showered with care packages, which can leave siblings feeling neglected or even resentful. When Tracey’s daughter was in treatment, she found it extremely helpful when people brought gifts for all of her kids instead of just one. If you can only send one gift, find a family game that they can all play together. Find a sibling camp There are many camps for just siblings or patients and siblings together. When Barbara’s son was in treatment, her other son “sometimes felt left out of all the fun things kids with cancer got to do.” A camp for siblings was an awesome way to give him his own fun experiences and allow him to meet other siblings who understood what he was going through. |
Give them a special experience
Camp is only a few days a year, but siblings deserve support all year long. Joy, whose son had leukemia, appreciated when friends would take her younger children for playdates. When my parents had to be in the hospital with me, family friends would sometimes take my sister to the movies or museums.
Keep life (somewhat) normal
During her daughter’s treatment, Cheryl tried to keep her life as normal as possible for her son. She recruited relatives and friends to stay with her daughter in the hospital so that she or her husband could be home for the start/end of the school day, dinner, and their son’s activities. Like Cheryl, my parents made sure that one parent was home as much as possible so my siblings could continue to play their sports and keep up with their other activities. When my parents couldn’t be there, friends and teammates offered rides.
Give them a special experience
Camp is only a few days a year, but siblings deserve support all year long. Joy, whose son had leukemia, appreciated when friends would take her younger children for playdates. When my parents had to be in the hospital with me, family friends would sometimes take my sister to the movies or museums.
Keep life (somewhat) normal
During her daughter’s treatment, Cheryl tried to keep her life as normal as possible for her son. She recruited relatives and friends to stay with her daughter in the hospital so that she or her husband could be home for the start/end of the school day, dinner, and their son’s activities. Like Cheryl, my parents made sure that one parent was home as much as possible so my siblings could continue to play their sports and keep up with their other activities. When my parents couldn’t be there, friends and teammates offered rides.
How can I get involved in the cancer community?
Some people don’t want to think about cancer once they’re out of the hospital, but others find it helpful and therapeutic to talk to other patients and get involved with cancer organizations. There are lots of great options, whether you’re looking for support, volunteer opportunities, or something else entirely. Your social worker can provide information about groups and organizations in your area.
Support groups
There are support groups for everyone: patients, siblings, parents, and even friends. Treatment can be an isolating experience, but these groups remind you that you’re not alone. They provide opportunities to meet other people who understand what you’re going through. Alice, a cancer survivor, found talking to other patients particularly helpful during her treatment. The doctors provide medical advice, but the patients have the “practical information that the doctors don’t.”
Support groups
There are support groups for everyone: patients, siblings, parents, and even friends. Treatment can be an isolating experience, but these groups remind you that you’re not alone. They provide opportunities to meet other people who understand what you’re going through. Alice, a cancer survivor, found talking to other patients particularly helpful during her treatment. The doctors provide medical advice, but the patients have the “practical information that the doctors don’t.”
Local organizations
If you’re not interested in a support group, you can still meet other patients and families through local organizations. Many local, cancer-focused non-profits organize outings to sports games, concerts, and other events. In the Baltimore area, Cool Kids Campaign, Believe in Tomorrow, Casey Cares Foundation and the Ulman Cancer Fund for Young Adults have been especially helpful for me and many of my friends. Volunteering I received a lot of support from local organizations during my treatment, and I love giving back by volunteering at their events and fundraisers. Find a cause that’s important to you and run/walk their 5K or man a water station. If sports aren’t for you, keep an eye out for less active events. I’ve volunteered at galas and fashion shows that benefit my favorite charities. |
Camp
There are camps all around the world that provide a supportive environment for patients and families. Some camps offer weekend getaways for the whole family, while others are only for patients or siblings. No matter what the setting, camp provides support. Kelsey and Emily, cancer survivors and long-time campers, recommend attending camps because they are an opportunity to meet other survivors who understand your experiences. Kelsey explained that cancer camps “show you’re not alone. Regular camps don’t get what you’re going through, but cancer-related camps do.” Barbara, whose son had leukemia, loved that there was a camp for siblings, because her other son “sometimes felt left out of all the fun things kids with cancer got to do.” See "Should I get involved in camp?" below for more information about different camps around the country. |
Should I get involved in camp? How?
Many patients and family members I’ve talked to highly recommend camps, or have heard great things and can’t wait until their kids are old enough to attend. During my first treatment in 2004, I refused to interact with any other patients. I wanted to get through treatment and be done with anything cancer-related for the rest of my life. When a classmate was diagnosed with another type of leukemia, we became friends. I realized how great it was to have someone who understood what I went through, even though I was finished with my treatment. She dragged me to a camp for cancer patients and their siblings, and it completely changed my life. I realized I’m not alone and that beating cancer is something to be proud of, not something I need to hide. When my disease returned years later, my camp friends were there to offer advice, support and hope.
How to find a camp
The Children’s Oncology Camping Association, International (COCA-I) is a community of camps for children with cancer and their families. There are approximately 100 member camps around the world, most of which are in the United States. Check out the map to find one near you.
How to find a camp
The Children’s Oncology Camping Association, International (COCA-I) is a community of camps for children with cancer and their families. There are approximately 100 member camps around the world, most of which are in the United States. Check out the map to find one near you.
Many camps are affiliated with hospitals, so when Joy sent her son to camp, “it was great because he already knew a lot of the medical staff.” This made her more comfortable during her son’s first week away from home. No matter where they are affiliated, most camps allow patients from any treatment center. Talk to your treatment team or social worker and see what they can recommend near you.
Who can attend Each camp is unique. Some are only for patients, others are only for siblings, and some are for the whole family together. There are camps specifically for brain cancer patients and others that you can only attend while you’re in treatment. Cancer affects the whole family, so whether you’re a patient, sibling, or parent, camp provides the opportunity to make friends who understand your experiences. Kelsey, a cancer survivor, summed it up well: “Regular camps don’t get what you’re going through, but cancer-related camps do.” |
Benefits of camp
Peer support: Patients and family members alike love that camp provides an opportunity to become friends with those who understand their experiences. A chance for normal activities: Camp is a place where patients and siblings can just be kids. Surrounded by other patients, nobody feels different or out of place, so everyone can focus on having fun. With medical staff on site, kids can get chemo or transfusions and then go right back to fun activities. Many kids have central lines that usually prevent them from swimming, but at camp they are often allowed in the pool with medical supervision. Hope: Many camps allow kids to return year after year, even when they are off treatment. It’s great to be surrounded by so many survivors. As I battled relapse after relapse, I could look around and see friends who had been cancer-free for decades and feel hopeful that would be me one day. A second family: There’s a special bond at camp that’s tough to explain. Even though we only spend a week together each year, when we return the next year, it’s like we were never apart. Leadership opportunities: One of the great things about camp is that you’re never too old. Once I was too old to be a camper, I became a counselor-in-training, then joined the activity staff and the planning committee. |
any advice for delivering dinner?
After a long day at the doctor, one of the nicest feelings is knowing that dinner has been taken care of. If you’re trying to help out a family after they’ve received a serious diagnosis like cancer, bringing them a meal would be a great option! If you’re looking for a little more guidance about what to bring, you’re in the right place.
Set up a meal calendar
There are plenty of sites that make meal calendars really easy, including Take Them A Meal and Meal Train. If the family hasn’t set one up, don’t hesitate to offer to do it yourself. Having a calendar allowed us to choose what days we could really use the help (usually the days I had appointments). This way we didn’t end up with too much food and my mom didn’t feel bad that people were bringing us meals on nights that she easily could have prepared something herself. A few parents left a cooler with ice packs on the porch in case they weren’t home when the food arrived.
Consider the number of people eating
When I was in the hospital, my mom would stay with me during the week. This left my dad and two siblings at home to eat the meals that were delivered. With 2-3 meals arriving every week, there were a ton of leftovers and unfortunately a lot of food. Many times, we would receive a main course, multiple sides, and dessert, which adds up to a lot of food! One mom recommends providing serving sizes for just one meal instead of including leftovers, because the leftovers often get tossed. If the family has a meal calendar, check how often it is receiving food or ask how many people will be eating.
Get creative
All meals were appreciated, but many patients and families mentioned that they got a lot of pasta. I think my siblings would be perfectly happy to never eat baked ziti again. We were very grateful for all the food we received, but our favorite meals were the more creative ones. They weren’t necessarily complicated but they were something different. There are other casseroles, soups and chili that can be delivered in a foil pan and heated up when the family is ready. During her mom’s treatment, Katie loved getting fresh food like salad.
Takeout is an option too
In our house, takeout is a rare treat. This probably isn’t the case for everyone, but in between countless pans of baked ziti, a meat lover pizza was a huge hit. Yes, the family could order takeout themselves, but that still requires some advance thinking, which can be limited during treatment.
Set up a meal calendar
There are plenty of sites that make meal calendars really easy, including Take Them A Meal and Meal Train. If the family hasn’t set one up, don’t hesitate to offer to do it yourself. Having a calendar allowed us to choose what days we could really use the help (usually the days I had appointments). This way we didn’t end up with too much food and my mom didn’t feel bad that people were bringing us meals on nights that she easily could have prepared something herself. A few parents left a cooler with ice packs on the porch in case they weren’t home when the food arrived.
Consider the number of people eating
When I was in the hospital, my mom would stay with me during the week. This left my dad and two siblings at home to eat the meals that were delivered. With 2-3 meals arriving every week, there were a ton of leftovers and unfortunately a lot of food. Many times, we would receive a main course, multiple sides, and dessert, which adds up to a lot of food! One mom recommends providing serving sizes for just one meal instead of including leftovers, because the leftovers often get tossed. If the family has a meal calendar, check how often it is receiving food or ask how many people will be eating.
Get creative
All meals were appreciated, but many patients and families mentioned that they got a lot of pasta. I think my siblings would be perfectly happy to never eat baked ziti again. We were very grateful for all the food we received, but our favorite meals were the more creative ones. They weren’t necessarily complicated but they were something different. There are other casseroles, soups and chili that can be delivered in a foil pan and heated up when the family is ready. During her mom’s treatment, Katie loved getting fresh food like salad.
Takeout is an option too
In our house, takeout is a rare treat. This probably isn’t the case for everyone, but in between countless pans of baked ziti, a meat lover pizza was a huge hit. Yes, the family could order takeout themselves, but that still requires some advance thinking, which can be limited during treatment.
OTHER HELPFUL INFORMATION
hELPFUL WEBSITES
There are many websites that can make life much easier during treatment. Organizing meals or updating everyone individually on your health is frustrating and exhausting, but there are many sites designed to help with these tasks.
Posting updates
When it comes to choosing a platform for sharing updates, the most common platforms are CaringBridge/CarePages, Facebook, and blogging sites. The biggest difference is who has access to the posts.
CarePages and Caringbridge: These sites offer privacy options so you can control access to your posts and see who is viewing your site. You can share updates and photos on a platform that is designed for just that. Followers can choose to receive a notification when new updates are posted. Alice, a cancer survivor, liked having an invitation-only, one-stop shop for her updates.
Facebook: Facebook allows you to reach a lot of people quickly, but some people may not want their personal information all over social media. Barbara, whose son had leukemia, said she loves “being public with her son's story and reaching out to their 'Team Jude' network, but for other friends, the idea of keeping a social media presence was too overwhelming.” On Facebook, you can choose to set up a private group or a more public page. Barbara, another cancer mom, also liked Facebook because it was “easy to update and post photos to,” but she set up a closed group “to keep spammers/creepy people out.”
Weebly, Wordpress, Wix, Blogger: I enjoyed creating my own site because I could be more creative and express my personality. It’s more time consuming than other options, but I like that people around the world can (and do!) read my story.
Meal calendars
Take Them A Meal, Meal Train, or other similar sites: People love to bring food, so it’s easy to end up with three pans of lasagna at your door on a night when you were actually home to make your own dinner. Meal calendars make it easy to organize a calendar so you know what you’re getting when. These sites allow people to post what they’re planning to bring, which can reduce the number of repetitive meals. You can even have someone else set it up for you so all you have to do is post the link wherever you post your updates. People always brought us such large servings that we asked for only two meals per week on the days that I had appointments.
CareCalendar: This site lets you set up meal calendars just like the other two, but it also lets you share other needs, like yardwork, cleaning, or rides to appointments. Some other meal calendar sites provide this option for a fee, but CareCalendar is free.
Posting updates
When it comes to choosing a platform for sharing updates, the most common platforms are CaringBridge/CarePages, Facebook, and blogging sites. The biggest difference is who has access to the posts.
CarePages and Caringbridge: These sites offer privacy options so you can control access to your posts and see who is viewing your site. You can share updates and photos on a platform that is designed for just that. Followers can choose to receive a notification when new updates are posted. Alice, a cancer survivor, liked having an invitation-only, one-stop shop for her updates.
Facebook: Facebook allows you to reach a lot of people quickly, but some people may not want their personal information all over social media. Barbara, whose son had leukemia, said she loves “being public with her son's story and reaching out to their 'Team Jude' network, but for other friends, the idea of keeping a social media presence was too overwhelming.” On Facebook, you can choose to set up a private group or a more public page. Barbara, another cancer mom, also liked Facebook because it was “easy to update and post photos to,” but she set up a closed group “to keep spammers/creepy people out.”
Weebly, Wordpress, Wix, Blogger: I enjoyed creating my own site because I could be more creative and express my personality. It’s more time consuming than other options, but I like that people around the world can (and do!) read my story.
Meal calendars
Take Them A Meal, Meal Train, or other similar sites: People love to bring food, so it’s easy to end up with three pans of lasagna at your door on a night when you were actually home to make your own dinner. Meal calendars make it easy to organize a calendar so you know what you’re getting when. These sites allow people to post what they’re planning to bring, which can reduce the number of repetitive meals. You can even have someone else set it up for you so all you have to do is post the link wherever you post your updates. People always brought us such large servings that we asked for only two meals per week on the days that I had appointments.
CareCalendar: This site lets you set up meal calendars just like the other two, but it also lets you share other needs, like yardwork, cleaning, or rides to appointments. Some other meal calendar sites provide this option for a fee, but CareCalendar is free.
Blogs
The internet is scary when it comes to statistics on your disease, but it can be a great resource for peer support. Sometimes it’s helpful to read other patients’ stories and see how they dealt with things. I Had Cancer: This is a peer-to-peer support community for patients, survivors, and supporters/caregivers. You can find anything – discussion boards, blog posts, and inspiration – and this site is great for finding someone who has been in your shoes. Riding the Cancer Coaster: Survival Guide for Teens and Young Adults: Clarissa is a long-time friend of mine from camp, and she was a great resource for me, especially as a young adult in treatment. Not only does she have a blog, but she’s also published a book, available on Amazon. |
There are thousands of blogs out there, some covering research, some focusing on patient stories, and others specific to a type of cancer. If you’re looking for other stories to read, I highly recommend doing a quick search on Google for blogs relevant to your situation.
Medical Jargon
As if hearing you have cancer isn’t hard enough, it can feel like everyone is speaking a foreign language once you start discussing treatment plans. After a while, you’ll know all about the different blood counts, hospital staff, and procedures, but all of this medical language can be overwhelming at first.
Blood counts
Absolute Neutrophil Count (ANC) is a measure of neutrophils, a type of white blood cell that fights infections. A low ANC means you are at significant risk for infection.
Platelets clot together to stop bleeding. Unusual bruising or bleeding can be a sign of low platelets.
Hematocrit and hemoglobin are measures of red blood cell volume and oxygen transport. When these numbers are low, you may feel tired or lightheaded.
Blood counts
Absolute Neutrophil Count (ANC) is a measure of neutrophils, a type of white blood cell that fights infections. A low ANC means you are at significant risk for infection.
Platelets clot together to stop bleeding. Unusual bruising or bleeding can be a sign of low platelets.
Hematocrit and hemoglobin are measures of red blood cell volume and oxygen transport. When these numbers are low, you may feel tired or lightheaded.
Hospital staff
Residents have graduated from medical school and are completing residency for more in-depth training in a specialty. Fellows have completed their residency and are spending a few more years getting advanced training in their chosen specialty. In some teaching hospitals, you will be assigned a fellow who will be your main point of contact regarding treatment plans. Attending physicians have completed their training. Attending physicians supervise the fellows and residents, and they have the final say in treatment plans. Nurses draw labs, give medications, and keep the doctors updated on the patients. Nurses spend more time with patients than the doctors, and therefore have closer relationships with patients. |
Treatments
Chemotherapy drugs kill, shrink, or disable cancer cells.
Radiation, such as x-rays and gamma rays, is used to shrink tumors or kill cancer cells. Radiation is usually targeted at a specific area such as a tumor.
Immunotherapy uses the body’s immune system to fight cancer cells. Immunotherapy is the newest type of treatment and there are many approaches still in trial.
Bone marrow transplant is a process to replace unhealthy bone marrow with healthy stem cells, often from a donor.
Spinal taps or lumbar punctures are procedures to collect cerebrospinal fluid. These procedures can be used to check for cancer cells or to inject chemotherapy.
Bone marrow aspirations are procedures that take a sample of the soft tissue inside the bone. Samples are usually taken from the hip and can be used to check for disease.
Central venous catheters (CVCs) are used to put medications and fluids directly into the bloodstream. They allow you to receive treatments without putting needles in your arm each time, which can damage the veins. The most common types of CVCs are PICC lines and ports. PICC lines are tubes that stick out of the skin. PICCs are inserted into the arm and can last for up to a few months. They need to be kept dry when you shower. A port is a small drum that is implanted in the chest completely under the skin and can be used for years. Special needles are stuck through the skin and into the drum to access the port. When it’s not being used, a port is just a small bump under the skin and does not need special treatment in the shower.
Chemotherapy drugs kill, shrink, or disable cancer cells.
Radiation, such as x-rays and gamma rays, is used to shrink tumors or kill cancer cells. Radiation is usually targeted at a specific area such as a tumor.
Immunotherapy uses the body’s immune system to fight cancer cells. Immunotherapy is the newest type of treatment and there are many approaches still in trial.
Bone marrow transplant is a process to replace unhealthy bone marrow with healthy stem cells, often from a donor.
Spinal taps or lumbar punctures are procedures to collect cerebrospinal fluid. These procedures can be used to check for cancer cells or to inject chemotherapy.
Bone marrow aspirations are procedures that take a sample of the soft tissue inside the bone. Samples are usually taken from the hip and can be used to check for disease.
Central venous catheters (CVCs) are used to put medications and fluids directly into the bloodstream. They allow you to receive treatments without putting needles in your arm each time, which can damage the veins. The most common types of CVCs are PICC lines and ports. PICC lines are tubes that stick out of the skin. PICCs are inserted into the arm and can last for up to a few months. They need to be kept dry when you shower. A port is a small drum that is implanted in the chest completely under the skin and can be used for years. Special needles are stuck through the skin and into the drum to access the port. When it’s not being used, a port is just a small bump under the skin and does not need special treatment in the shower.
fRIENDS' PERSPECTIVES
Being a friend to a cancer patient isn’t always easy, especially when you can’t relate to his or her problems. Every friendship is affected differently, but the most important thing to remember is that friends support each other through the good times and the bad. Having a strong support system makes the tough days much easier for the patient.
Finding a balance
One of the biggest challenges for friends is finding the right balance between positivity and frustration. “It’s complicated because you don’t want to be annoyingly positive when sometimes it really sucks, but I also never wanted my friend to feel guilty that she was the reason I was upset because none of it was her fault. I bawled my eyes out to some of my other close friends about how life is so incredibly unfair,” explained Casey, a close friend of a cancer patient. Another close friend, Jenn, said it was also a challenge to find a balance when “talking to the patient about exciting events in your own life. I can see where that would be upsetting, but could also help keep her mind off stuff.” It can be frustrating for patients to see their friends’ lives continuing normally when theirs are stuck in a standstill, but it can also be upsetting if friends stop confiding in them. |
Providing support
Patients usually have quite a few friends and neighbors who can bring meals, but nobody provides emotional support quite like a best friend. Casey said she tried to maintain a sense of normalcy with her friend, “while also acknowledging all the life changes cancer brings and trying to be there to talk if need be.” She also made sure that annual friendship traditions, such as their Christmas and New Year’s Eve parties, could be brought to the hospital or kept germ-free enough for the patient at home. Jenn is close with the patient’s whole family, so she also checked in on other family members. Amanda, another friend of a patient, raised money for certain cancer organizations she knew were important to her friend. |
Best advice for a friend of a patient
“It sucks a lot, but at the root of it, nothing has really changed. Your best friend is still your best friend. She still needs to you to be her best friend even though she has cancer, and even if that means sometimes your conversations are debates about what color her hair might grow back,” said Casey. Amanda agreed: “Try to treat your friend like you normally would because they are the same friend you always knew. Being there for your friend in whatever way she needs is what’s most important.” Jenn added, “Don’t be afraid to go to the hospital – they aren’t scary to visit! Just make sure you check that your friend is up for visitors.”
Friends that stay supportive throughout treatment are the best ones to have around because you know you can make it through anything. Most people’s friendships change a lot through middle school, high school, and college, but the girls that were by my side through my original treatment are still some of my closest friends ten years later.
“It sucks a lot, but at the root of it, nothing has really changed. Your best friend is still your best friend. She still needs to you to be her best friend even though she has cancer, and even if that means sometimes your conversations are debates about what color her hair might grow back,” said Casey. Amanda agreed: “Try to treat your friend like you normally would because they are the same friend you always knew. Being there for your friend in whatever way she needs is what’s most important.” Jenn added, “Don’t be afraid to go to the hospital – they aren’t scary to visit! Just make sure you check that your friend is up for visitors.”
Friends that stay supportive throughout treatment are the best ones to have around because you know you can make it through anything. Most people’s friendships change a lot through middle school, high school, and college, but the girls that were by my side through my original treatment are still some of my closest friends ten years later.
Cancer and College
Young adult patients are in a unique position because they are much older than most people in the pediatric units, but much younger than the typical adult patients. Whether you’re a patient or a long-term survivor, cancer could affect your time in college in many ways.
Applications
Many college application essays ask questions about an experience or person that changed your life. Your friends might struggle to find something meaningful, but you have an easy answer. Make sure you focus on how you grew from your experience or how it shaped your career path. In my essay, I talked about how going to camp made me a more positive person and encouraged me to give back.
Scholarships
There are dozens of scholarships available, not just for patients/survivors but also for family members. Many scholarships are national, such as those from Cancer Survivors’ Fund, Cancer for College, National Collegiate Cancer Foundation, Patient Advocate Foundation, and Special Love. Dozens of others are regional. Many of these scholarships provide up to a few thousand dollars, but others, like the Eagles Fly for Leukemia scholarship, pay full tuition at some Philadelphia universities, including Drexel and St. Joseph’s.
Office of Disability Resources
This office may have a slightly different name at different colleges, but no matter where you are, it is a good resource. At first, I wanted nothing to do with ODR because I didn’t think of my disease as a disability. However, I learned that ODR can make all sorts of accommodations. I have friends who have trouble focusing on tests (a long-term side effect from some medications), and they have gotten more time for exams. I had an accommodation that provided me advance notice of assignments and sometimes extended deadlines to accommodate my unpredictable treatment schedule. I also used ODR to get out of my university housing contract because sharing a bedroom/bathroom was not acceptable during treatment.
Professors and Advisors
I’ll be graduating with two degrees, a minor, and honors, but there is no way that would be possible without my professors and academic advisors. My advisors helped me revise my plan of study whenever I took terms off, and they worked with me to make reasonable substitutions when my required classes weren’t offered during the terms I was on campus. Drexel has a large online program, so I was able to take a few classes when I was home for treatment. One term, I was on campus for the first few weeks of the term and had to leave suddenly in the middle. I explained the situation to my professors, and they agreed to work with me remotely instead of forcing me to withdraw.
Applications
Many college application essays ask questions about an experience or person that changed your life. Your friends might struggle to find something meaningful, but you have an easy answer. Make sure you focus on how you grew from your experience or how it shaped your career path. In my essay, I talked about how going to camp made me a more positive person and encouraged me to give back.
Scholarships
There are dozens of scholarships available, not just for patients/survivors but also for family members. Many scholarships are national, such as those from Cancer Survivors’ Fund, Cancer for College, National Collegiate Cancer Foundation, Patient Advocate Foundation, and Special Love. Dozens of others are regional. Many of these scholarships provide up to a few thousand dollars, but others, like the Eagles Fly for Leukemia scholarship, pay full tuition at some Philadelphia universities, including Drexel and St. Joseph’s.
Office of Disability Resources
This office may have a slightly different name at different colleges, but no matter where you are, it is a good resource. At first, I wanted nothing to do with ODR because I didn’t think of my disease as a disability. However, I learned that ODR can make all sorts of accommodations. I have friends who have trouble focusing on tests (a long-term side effect from some medications), and they have gotten more time for exams. I had an accommodation that provided me advance notice of assignments and sometimes extended deadlines to accommodate my unpredictable treatment schedule. I also used ODR to get out of my university housing contract because sharing a bedroom/bathroom was not acceptable during treatment.
Professors and Advisors
I’ll be graduating with two degrees, a minor, and honors, but there is no way that would be possible without my professors and academic advisors. My advisors helped me revise my plan of study whenever I took terms off, and they worked with me to make reasonable substitutions when my required classes weren’t offered during the terms I was on campus. Drexel has a large online program, so I was able to take a few classes when I was home for treatment. One term, I was on campus for the first few weeks of the term and had to leave suddenly in the middle. I explained the situation to my professors, and they agreed to work with me remotely instead of forcing me to withdraw.
cHAINS OF LOVE FOR TRANSPLANT PATIENTS
After a bone marrow transplant, patients have to stay close to the hospital for 100 days in case of an infection or reaction to the new marrow. As I prepared for the transplant process and my 100 days away from home, one of my nurses recommended having something to look forward to each day. She mentioned that some people make paper chains and rip a piece off each day to count down the days, but I knew ripping a piece of paper was not going to keep me motivated during the most intense treatment I’d ever experienced.
I decided to make a more interesting paper chain filled with messages from my friends. I posted a form on my blog, where my faithful readers could submit inspirational quotes, notes, jokes, funny memories, fun facts, recipes, book/movie recommendations and more. I knew I’d be tempted to peek, so I had all of the responses sent to two of my friends who put the chain together. During my 100 days, I read a chain link each day. I loved reading the messages, especially on the days I really didn’t feel well. Amanda, a leukemia survivor, agreed: “It helped pass the days a little faster having something to look forward to.” Between my transplant and the end of my 100 days, I had three friends who were also getting transplants. I decided to make them countdown chains because I was enjoying mine so much. I used Google Forms to collect messages and sent the links to their families to spread the word. I delivered each chain to my friends in time for their day 0 (transplant day). They brightened their hospital rooms and gave them at least one smile every day. “I absolutely love it, and so does everyone else that comes in my room,” said Amanda. |
How to make a chain
Want to make a chain for someone in your life? I recommend using Google Forms. If you have a Google/Gmail account, it’s easy! If not, there are plenty of other free form makers (or a Google account is free).
- Go to drive.google.com. Anyway, near the top left, click the blue “NEW” button, then select “Google Form.”
- Name your form. Under the form title is a space for a form description. This is where I include a description of the chain project and give people some ideas for submissions – notes, jokes, memories, etc. I’ve tried to keep the chains a surprise for all of my friends, so I mentioned that in the description as well.
- In the top right corner of the page, you can click on the color palette button to change the form background color. In the color palette menu, you can also click on the photo button in the bottom right, which allows you to choose a theme instead of a color. I selected a birthday theme because a transplant is referred to as a new birthday.
- Make your first question “Name.” If it doesn’t adjust automatically, choose short answer as the type of question. In the lower right, you have the ability to make a question required. I recommend leaving name optional. Some of the most inspirational quotes I received were anonymous.
- Click the plus sign on the toolbar on right to add another question. This one is for the message. If it doesn’t automatically adjust, choose paragraph text. This will allow people to submit messages however long they desire. Make sure this question is marked as required!
- At the top of the page, click the send button. You can send via email or get the link to post on social email. Share the form! Consider the patients’ friends from school and camp, family, neighbors, etc.
- Once you close the send menu, you can click on the responses button. This allows you to see the answers question by question, but when you’re ready to make the chain, you’ll need to click on the green button to create a spreadsheet.
- When you have enough responses, you can close the form using the purple slider on the responses page.
Putting the chains together
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Since I was counting down for bone marrow transplants, my chains were usually 108 days: 100 days post-transplant plus prep week and day zero (transplant day). I numbered each link starting with -7 before stapling them together in order. I had extra submissions for some of the chains I made, so I added the extra links on to the end in case they had a milestone day or a tough day and needed some extra encouragement.
Travel resources
LOTS of resources
http://yacancerconnection.org/resources/
Local to us here in MD, lots of support available
ulmanfund.org/
Learn to surf/paddleboard or ski/snowboard!
https://www.projectkoru.org/
Outdoor activities in California
https://www.senditfoundation.org/foundation/programs/
Retreats and workshops, and a Campference
http://www.nextstepnet.org/node/51
backcountry and not-so-backcountry adventures
http://www.truenorthtreks.org/what-we-do.html
Respite vacations, with a preference for patients in the mid-Atlantic area
https://takeabreakfromcancer.org/program/
This organization has a camp, and also has links to LOTS of other camps and resources.
https://www.cassiehinesshoescancer.org/camps/
http://yacancerconnection.org/resources/
Local to us here in MD, lots of support available
ulmanfund.org/
Learn to surf/paddleboard or ski/snowboard!
https://www.projectkoru.org/
Outdoor activities in California
https://www.senditfoundation.org/foundation/programs/
Retreats and workshops, and a Campference
http://www.nextstepnet.org/node/51
backcountry and not-so-backcountry adventures
http://www.truenorthtreks.org/what-we-do.html
Respite vacations, with a preference for patients in the mid-Atlantic area
https://takeabreakfromcancer.org/program/
This organization has a camp, and also has links to LOTS of other camps and resources.
https://www.cassiehinesshoescancer.org/camps/