Chemo-Savvy: A CML Patient's Top 5 Caregiver Tips

By Maria Valente

2 min read

I’ve been a leukemia patient since 2011 and it isn’t always easy to navigate this disease. It can be painful, disturbing, and confusing even on my best days. I think my fellow blood cancer patients can relate.

Caregivers are a blessing

Sometimes, when we are in deep pain, discomfort, confusion, and a deteriorating quality of life, it’s very challenging to be a good problem solver. There are so many layers of change in the body that we have a really hard time keeping up with the symptoms and the side effects. Having someone close to us who can help us navigate this disease is a true blessing.

While we are mired in what feels like quicksand we need a hand to pull us up sometimes. If someone you love is a blood cancer patient, I’ve written this for you.

Very helpful caregiver tasks

Here are my top five ways to be a Chemo-Savvy partner, loved one, caregiver, friend… Drumroll please… Let's go…

#5: Help keep a calendar. Appointments/tests/procedures are all very important. Keeping a calendar is incredibly helpful. On this calendar you can include where the tests/appointments/procedures are, how to get there and safely home again, any preparations that need to be made or care needed after, what to do when the test is over, and how to celebrate that.
#4: Help keep a journal. Make notes of what the doctor says, any advice your loved one needs to follow, where to get and how to use prescribed medication, what to watch out for and when it is necessary to alert your doctor should something go wrong.
#3: Help Keep a medication schedule. Medication times can be put on a calendar, on a phone with alerts, arranged in pill boxes or the pharmacist can bubble pack them. Whatever works best for your loved one to take medication properly is the best way to help them. Try different things until a medication routine is established. Extra help might be needed during any medication change. It’s always good to know that help is near when we get confused.
#2: Help keep a stocked fridge of favorite foods. Eating during treatment is not always easy, but it is always necessary. I don’t think that there is any particular diet that works well for all of us. Sometimes our taste buds disappear and texture becomes important. Think soup, stews, puddings, milkshakes. Sometimes our taste buds are sturdy and we’ll grab hot buffalo wings and garlic bread! True story! Whatever the situation is making food edible is where a hand up can really be appreciated.
#1: Help keep the relationship alive by taking good care of yourself too. Caregiver exhaustion is a real thing. The better we take care of ourselves, the better we can take care of each other. So, find the time to have fun, have a break, have an adventure, make a memory and enjoy each other's company. because when we love each other that’s what we do.

Getting by with a little help

I truly believe this disease can be managed, can be brought to heel, can be tamed and with a little help we can enjoy the good times with the ones we love.

Do you have some chemo-savvy tips and tricks that you find really helpful as a caregiver? I’d love to hear about them below. Thanks so much for reading.

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Connie Connely Contributor
Good article, Maria! I love your tips.
1. Maria Valente Moderator
 <inline-mention username="Connie Connely" user-id="3639405"/> Thanks so much. This is what has been helpful for me and I'm so happy to share it. All the best <inline-mention username="Connie Connely" user-id="3639405"/>
Dennis Golden Moderator
<inline-mention username="Maria Valente" user-id="3654780"/> One tip I would offer to every caregiver is ... Find a caregiver for yourself. It is so important to be able to unwind or be given a break when you are caring for someone else. A close friend of mine said while she was caring for her husband (who was in the final stages of lung cancer) a neighbor would come over every morning at 7 AM with a cup of coffee for her and say - "I am here for the next 2 hours to sit with and care for your husband ... now ... go do something for yourself" Often it was just the ability to enjoy a longer shower or take the dog for a longer walk or to sit on the back deck take in a deep breadth while listening to the birds sing. Not a word needed to be said and yet it was the most healing time anyone could offer. Dennis (Blood-Cancer.com TEAM)
1. Maria Valente Moderator
 Some well deserved "me" time! Yes <inline-mention username="Dennis Golden" user-id="3641422"/>! That's exactly what recharges the batteries! Being a caregiver can become exhausting over time, and having time for self care is critical. To be able to depend on that daily? Well, that's a gift that keeps on giving. What a wonderful friend. I just loved hearing about this. Thanks so much for sharing. 
2. Amanda Brunson Moderator & Contributor
 <inline-mention username="Dennis Golden" user-id="3641422"/> what a beautiful blessing that was, it’s the little things like this that goes a long way 🫂and so meaningful 💞 <inline-mention username="Dennis Golden" user-id="3641422"/> this blessed me to read. Talk about speaking to a person’s love language 💗
Yolanda Brunson-Sarrabo Moderator & Contributor
Awesome tips! I love the keeping favorite treats fully stocked! There's no need adding to the stress of being in the mood for something when there is an appetite only not to have it readily available. It's the little things : )
1. Maria Valente Moderator
 <inline-mention username="Yolanda Brunson-Sarrabo" user-id="3647991"/> It really is! Some of the things that can really help are not all that complicated. To have a loved one with cancer can feel like a heavy weight, but we can widdle that down to something more manageable. Every little bit helps.
2. Yolanda Brunson-Sarrabo Moderator & Contributor
 <inline-mention username="Maria Valente" user-id="3654780"/> So true!
Susan Gonsalves Moderator & Contributor
Good tips, my friend. Being a caregiver is tough work and when you are one it is easy to overlook yourself. I love the idea of finding someone who can take over now and then to give the caregiver a break! Wish that had happened...Sometimes, it takes someone else having to step up to get them to realize what hard work it is. Meanwhile, take care and if you are somewhere with crazy storms, stay safe. Susan (Blood-Cancer.com Team Member) 
1. Maria Valente Moderator
 <inline-mention username="Susan Gonsalves" user-id="3653135"/> Most of us I think carry on trying our best to not be a burden. It isn't something we want to be perceived as. For those of us fortunate enough to have a loved one who is invested in the relationship, who might feel lost in how to help, these are the most concrete things I can think of to do. Having a person like this in our lives is a true blessing, a privilege denied many.
Dennis Golden Moderator
Susan Gonsalves It is so easy when you as patient or caregiver are in the throws of a blood cancer diagnosis or in treatment, or in between etc to go silent, focus your full attention on what needs to be done and then retreat into your private space . For a minute Imagine going into Ben& Jerry's and asking the person behind the counter for an Ice Cream cone. The person knows you have a need, but would not know which one of the 54 flavors or combinations of flavors you wanted. As soon as you say want a vanilla cone with sprinkles... things begin to happen. When you as a patient or care giver have needs be specific when asking for help. Now is not the to be bashful and who knows at some point you may be able to offer help to someone else who is in need. Dennis (Blood-Cancer.com TEAM)

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