What you can do for a cancer patient and their family

Mike had treatment last Thursday. They have continued to hold off on one of his chemo drugs due to his nails still bothering him. We are still nervous about this and hope to get back on track in two weeks. Ava caught another cold and generously shared it with me. I have been feeling pretty crummy and Mike's been keeping his distance from us both! 

For Christmas I got Mike a gift card to a shooting range. We went on Saturday! We both have never been and it was a lot of fun. I am so glad he enjoyed it! 

Here are some photos of Ava and the Clydesdale horses at Kimball farm in Haverhill. Horses names are Mark and Mike! (The horses names crack us up... my dads name is Mark) in the fall we went in a hayride with the horses! 

Mike is very happy about his Patriots being in the playoffs! Let's go Pats! 

Not to much to update you all this time. I have been working on a list below that I wanted to share. I hope it helpful! 

What you can do for a cancer patient and their family...

Before my husband, Mike was diagnosed with cancer, I had no idea what to do or say in such situations. In fact in the past I handled such moments with silence and awkward body language, simply for the lack of knowledge and experience. Now that I have dealt first hand with being a caregiver for a sick spouse I have learned a lot. Everyone has different life experiences…. Some have more experience and some have less either way everyone and every situation is different.

When Mike first got diagnosed it was so hard to function day to day never mind be able to talk about it with others. We were so overwhelmed and didn’t know how to ask for help or what to ask for – but we sure needed it. When you have a friend or family member newly diagnosed with cancer of course you want to help! But how? Don't make the mistake of making a vague, questionably-sincere offer "Well, call me when you need me if you just want to vent!" (they won't).

Instead, make your family member or friend's life easier by anticipating his or her needs and giving tangible, much-needed support. Here is a list of things that helped and continues to help us and I hope they will help others in the same situation! As time goes on we continue to learn more. Every patient and family is different. This is a list from my husband’s point of view as well as mine (the caregiver). Some things are in general and some are very specific to our journey. This is an ongoing list that will be updated as situations arise.

1.       Don't put on "Cancer Face": You know, The "look". That expression of pity, sadness, or concerned looks. I know that these looks are unintentional, and that the emotions behind them are very real, but try not to appear as though you are saying your final good-byes in these moments. It can be scary for the patient. And certainly don't put your sick friend in the position of having to comfort you.

2.      Bring or send a meal: Cook something for the family. If they are not up for visitors, leave it outside the door in a cooler and send them a text to let them know it’s there. If there are children it is helpful to include a kid friendly option. Not up for cooking? Find out their favorite delivery place; call, place an order and have it delivered to the home. Include a tip so the family doesn’t have to search for money. Of course let them know when to expect the delivery. Either way also let the family know when you would like to cook/send a meal so they don’t get duplicates on the same days. For us meals on treatment days are helpful. After spending hours at the hospital for treatments in the city the last thing we want is to come home and think about dinner.

Tip: If you or someone in your home is sick with a cold or stomach bug think twice about preparing a meal for a cancer patient and their family. Germs spread and the last thing you want is to get them sick! Either way be sure to wash your hands thoroughly and make sure you clean utensils and cooking surfaces before you use them. Also don’t go crazy and make too much food. You would think more food is better but often too much food gets thrown out. There is either no room to store it or you can only eat so much lasagna in one week! A meal for one or two sittings is plenty, sometimes less is more!

3.      Unexpected visitors: Never show up unexpected without calling or letting the family know. Sometimes we’re just not up for visitors. Be respectful it’s nothing personal. For us you never know when we’re having an emotional day or spending quality time together. Not that we walk around naked but heck even if we did we don’t want others to scare us and see our “goodies!” ;) Even if you text or leave a message make sure the person responds to say it’s okay to visit. Don’t assume they saw your message.

4.     Positive vibes: Let them know you’re thinking of them but don’t expect to get a response. Add a “no need to respond" to the end of your message. They'll appreciate hearing from you without feeling the need to do anything in return. Sometimes it’s nice to know you cross other people’s minds. So often friends and families continue on living their lives and for us it feels like we are forgotten about even if that’s not the case!

5.      Don’t take it personally: After a diagnosis you may notice the patient or their caregivers personalities change. Maybe they don’t respond to you like they used to. They don’t laugh at jokes that they once did. Their minds are constantly racing with thoughts. You may notice when you look at them their faces look blank. Please, please, please don’t take it personally if they don’t respond like they use to or act differently now. Until you have been sick yourself you can’t begin to understand and know how it feels. Even if you have been in their shoes you can’t expect them to act the same way you may have. Our lives have forever changed and we’re still learning how to adapt.

6.     Help with errands: If you’re at a store send a text and let them know and ask if they'd like you to pick anything up for them. So often there are little things we need but don’t have the energy to go get it ourselves.

7.      It’s hard to ask for help: When Mike first got sick it was hard to keep our heads high and ask for help. We didn’t want to feel like his diagnosis got the best of us. We wanted to feel normal and capable of everyday routines. It took time for us to reach out and ask for help. You wouldn’t believe how hard it is to work up the courage to ask for someone to run an errand, cook a meal, or pick up a prescription.

Tip: If you are asked to help out in some way try to make sure you can find the time to do it. Not that everyone should jump when we snap our fingers but there’s nothing worse when you finally break down and ask for help and someone makes a “big deal” out of it. We don’t want to put you out so be upfront and honest if you can’t do something let us know so we can ask someone else.

8.     Don't ask, "What can I do?": Instead, think of things you can do that might be helpful and just do them. However, make sure that they do not require input or participation from your friend or their family. Understand that a cancer patient and their family are often too overwhelmed to ask for what they need; take the initiative by offering specifics, instead of saying, "Let me know if there's anything I can do for you." More often than not if you’re too general we won’t ask for what we really need! However don’t come across as overbearing! Say, "Give me a task." Maybe it will be laundry, or an errand, or picking up groceries. Be in and out. No socializing needed. If they don’t have anything to offer help with also be respectful and let them know the offer still stands and again, mean it.

9.     Help Clean-up: Keeping the house and yard clean when there is a sick family member is often difficult. Offer a helping hand to help the family clean or work on the yard. Before Mike got sick he was always helpful with the house and keeping it clean. There was no “man” or “women” chores. We were a team and helped each other out. However, when Mike got sick our team effort turned into a one "wo-man" show. I don’t blame him at all he shouldn’t have to have the responsibility or burden to clean the house. However, for those who know me know how OCD I am about being clean. I get stressed when the house is messy it’s just how I am wired and I can’t shut it off. Sometimes keeping the house clean after two adults a child and dog keeps me running around like a maniac till 1am. I know I could use the help!

10.  Have a skill?: Have time to help and you are handy? Often many things go undone around a home where someone is sick. Offer to fix things around the house… whether it’s a loose towel holder, leaky sink, moving heavy furniture, hanging a photo, painting a room, picking up the yard, shoveling, etc. I know there are many things someone can help out with.

11.   Let them know you're "on call": Cancer is unpredictable; you never know when something is going to happen. Of course we have our families to rely on but if an emergency is to arise let them know you are available to help all hours of the day and night and most importantly, mean it.

12.  Send a surprise/gift: We often have so many people that want to help and do more but don’t know what to do. We are pretty simple… here are some ideas for those who always want to do more… send an edible arrangement, flowers, a game to play, gift card (gas cards and grocery cards are VERY helpful), magazine subscription, movie, a visit to the spa for a massage, chocolates, or a just a simple note. Let’s be honest who doesn’t love a surprise in the mail? Having something that arrives in the mail even if it’s just a note can help lift our spirits.

13.  Mood swings: We're sorry if we're cranky, emotional, grumpy, afraid, snippy or more. It's hard to keep emotions under control. One minute we could be fine and the next we're not. At times a song, smell, or thought can trigger a waterfall of emotions for us. Be patient with us and don't take our attitudes or bad days to heart. We don't mean it

14.  Don’t be afraid: More often than not people walk around on egg shells around us. Given the circumstances it’s defiantly understandable. However, please don’t treat a cancer patient and their spouse differently. It tends to push them away. They want to feel as normal as they can. Act the same way as you would before they were sick. We know there is a fine line that’s hard to distinguish sometimes. Try to take into consideration to not to push them to do things there physically not capable of doing anymore or just don’t want to do.  

15.  Don’t enable: Believe it or not this happens more than you think! Don’t make decisions for the patient. Try not to go around them to ask their caregiver questions about them if they are capable to answer you on their own. Don’t team up them and give an “intervention”. The last thing they want is to feel enabled. Or as if there not “capable” to make decisions, plans or choices on their own.

16.  Remember you’re not the only one: Often many friends and family members want to help out when someone is sick. Try to remember you’re most likely not the only one offering to help. So if there is nothing to do this time don’t get discouraged. You never know when something might come up.

17.   Don’t get offended: Don’t be offended if we have to cancel our plans to hang out. It’s hard to plan days in advance you just never know when the cancer patient may not feel well or up to it. Also don’t get offended if you’re able to consistently help one week and then the next day it doesn’t work out anymore. It’s so hard to make and stick with concrete plans.

18.  How are you feeling?: This is a daily battle. This one is from Mike directly. He never knows what to say in the moment but so badly gets frustrated with this question. So here's the brutally honest truth. Mike is a cancer patient and he never feels 100% well. Whether he's in pain from the cancer itself or nauseous from the treatments there are always unpleasant side effects to battle. He’s always tired mentally, emotionally, or physically. He never gets a break. He worries about his future, his daughter, me and his family. One thing people have to remind themselves is they are not the only ones asking him how he feels. Everyone does, because of course everyone cares. He gets it, we get it. When we are working we see many people in the community. It's a constant back to back “how are you feeling”, “how are you”, or the worst one yet “you don't look so well”. One of these days I'm waiting for him to snap and say, “how do you think I am feeling I have cancer and I'm dying”. I wonder how someone would respond? He could be having an ok day and someone tells him basically you look like crap. That ok day then goes to a worse day. In all try to refrain from asking questions about how he's feeling and more general things like "what's new?” This blog is a great way to stay informed about his health so we don’t feel like broken records.

19.  Just listen: Don't share stories about how your now-dead friend/family member had the exact same diagnosis, symptoms, doctor, or treatment plan. We're never ready for such information. We'll likely become hungry for cancer stories later and have hundreds of questions. In the beginning, however, if you can't say something positive, don't say anything at all. Don't give over bearing advice, don't try to be super cheery, don't push lifesaving remedies or magic pills you have heard about. Though we do appreciate the information and advice, we also hear it a lot and need to make decisions on our own. Provide us with the information and if we would like to peruse it more we will get in touch with you to do so.  Unless we ask for this type of information-- just listen and let your friend talk.

20. Cancer isn't contagious: Give your friend a hug to let them know you're on their side. For me this may help as for Mike he doesn’t like to be touched! Only Ava and I get touching privileges. 😉 Most of all Mike doesn't want situations to feel awkward and he doesn't want to be stressed out! Sometimes he as well as I just need space. In those times being respectful is the best thing to do to help us. 

21.  Things not to say: I don’t know how you do this? I couldn’t do what you’re doing. Those these may come out naturally there not things you want to hear. You do what you have to for the ones you love when you’re in the situation. Please don't judge us. If you haven’t been through it before DON’T SAY YOU UNDERSTAND or “know” how it feels. Everyone has different experiences. It may be helpful to share your experiences but don’t explain how they are alike or compare them. We don’t want to hear this! In the beginning or maybe throughout it all we don’t want to hear how “strong” we are. Frankly we don’t always feel strong and don’t want to be told over and over.

22. Don’t take things personally: Sometimes we say things we don’t mean or say nothing at all. We get cranky, grumpy, depressed, and we’re sad. If we don’t return a call or text right away please don’t take it personally. We don’t keep our phones with us all the time anymore and they are both always on silent. This way we can get rest at night and sneak naps in during the day when needed.

23. If something happens don’t hide it: If you or someone we care about is rushed to the hospital in the middle of the night, you have a bad break up, or are in an accident don’t hide it. Often people think we can’t “handle it”. To be honest we usually can handle it better than anyone else. Our lives are different now. We have been through a lot! The amount of stress, fear and panic we have dealt with has prepared us for pretty much anything. Sometimes we may be the best people to talk to!

24. Tells us about your lives: Don't avoid telling your friend about your latest problem at work or the terrible thing your boyfriend did last night. We're still the same old friend you've always had ... don't shield us from reality. After being in cancer world all day, we'd love to dish with you just as much as we always did, if not more. In fact, we're probably starved for the latest mindless gossip ... anything not cancer-related. But at the same time we might want to talk about the cancer, so leave that door open as well. And if you don't know what to say, just say that. "I don't know what to say." Same goes for the happy moments in life… having a baby? Going on vacation? Got a promotion? TELL US. Just because our lives are difficult right now doesn’t mean we don’t want to share your milestones and life victories with you!

25. Don't disappear. You may not know what to say or do; you may feel awkward or sad or uncomfortable. At those times, it's easy just to fade into the background. To not call, to not visit. To not say anything because you don't know what to say. Try to resist this very human urge. Try to just show up, even if it's just to leave a voice mail or send an e-mail or drop a card in the mail. Let the other person know that you're thinking about them when you are.

26. Caregiver: Literally means to give care to someone else. I believe it is the hardest job in the entire world. They often become the interpreter between the patient and everyone else. Everything ends up going through them and sometimes puts them in an awkward position. Sometimes they even become a punching bag to protect the patient. They are always tending to the sick persons needs and trying to take care of everything else at the same time. Their needs often go unnoticed and pushed to the side. They need a break too sometimes (even if they won't admit it). If you have been a care giver yourself pat yourself on the back it is the most selfless thing you could ever do for someone else. You are always on duty and in the front lines of the battle. If you know a caregiver give them big hug and recognize them for their work I know they could use it! 

27.  Respect wishes: Please remember to be respectful of the family’s wishes. You may be hurting but they are hurting just as bad if not worse. You may want to jump in and tell them what they should do but leave his up to the patient and their spouse/family. We have discussed at great lengths how we (mostly Mike) would like things done if there is a turn for the worse. We have talked about anything from last bedside wishes to funeral services. These are topics that most people are unable to discuss when a loved one is sick. It takes a lot of strength to be able to talk about these things. I know what Mike wants he's written his wishes down and had made them clear. Please don't turn the spouse or caregiver into the bad person if you don't agree with the decisions that have been made. Don’t try to change them to benefit anyone else. I've seen this rip families apart after losing a loved one and nobody wants that. 

28. Don't be selfish: When someone is sick they need to put themselves first. Other people's needs and wants can’t trump the sick person. Think you know how to make someone feel better because it helped you in the past? Think again. You can't force someone to do something. For example cancer support group therapy worked for you? That's great but that doesn't mean it will work for someone else. Nobody wants to be pushed or have to feel bad because someone else wants them to do something that they think the patient needs. It's nice to suggest things but not push it upon them. At times you have to stop and think is this in my best interest or the patients? If we don't believe it's in the patient’s (Mike’s) best interest we have every right to make that call. Sometimes you have to let your arguments go in order to support the patient. 

Lessons you can learn for a cancer patient 

29. Don't sweat the small stuff: Don't stress about the small things in life. Don't complain that you have it hard when you don't. Get in a fender bender? Well yeah that sucks but be thankful you’re okay. Have drama in your life? Find a way to get rid of it. It's simply not worth it. Surround yourself with friends and family that love you and not people who bring you down. In a bad relationship? Not happy with your life? Find a way to change it for the better. You are in control of your own happiness! Most importantly take nothing for granted... Why you ask? Because NO ONE is guaranteed another day. So stop sweating the small stuff and start living!

30. Be kind: Be kind to one another. I've learned to smile when things are hard. You never know what silent battles people are struggling with at home. The next time you have a cranky waitress or a rude cashier try to think about what they may be going through. Even if in the end they are just nasty people you didn't waste your kindness on them... In the end it makes you a better person. 

I hope people find this to be helpful! Remember these are things that have worked for us. Every patient and family is different... So take that into consideration. When it doubt simply just ask if it's okay. Feel free to share this list with anyone and everyone!

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