Have you heard of Ring Theory? It’s a fairly simple concept of support and communication that can be extremely helpful for cancer patients and their loved ones.Continue reading
What To Say When You Don’t Know What To Say
I have short hair and because of the weather where I live, often wear a small beanie. When your neck and your ears are naked, your head gets cold! Well, I was at REI the other day, wearing my beanie and a Lacuna Loft hoodie. A guy walked by with his small child in tow. He looked at me and very kindly said, “that’s a really cool hat.” I thanked him, feeling slightly confused but flattered, and he walked away.
As I thought about our interaction, it suddenly hit me. This guy thought I was a cancer patient. I had a hoodie that literally says, “young adult cancer resources.” I was wearing a beanie with almost no hair poking out from under it. I have circles under my eyes and often look tired without any makeup (thanks, chemo!).
And the more I thought about it, the sweeter the interaction felt in my heart. This man had no idea who I was but saw an opportunity to say something nice, and did so. When he might have otherwise not known what to say and ignored the signs that I might be going through a crisis, he said something.
The moral is this: when you don’t know what to say, say something anyway. Say you like their hat. Say the weather is great (or not great) today. You don’t need to ask a personal question or even try and connect with what you’re assuming they are going through.
Nice hat. Great t-shirt. Awesome menu choice.
Engage over the smallest thing. It’s easy and it will make all the difference.
3 Important Questions To Ask At Your Mammogram Appointment
“Breast density is recognized as one of, and possibly the strongest risk factor associated with development of breast cancer, according to the National Institute of Health.”
Getting cancer is complicated, especially as a young adult. Your peer group won’t be well armed to advise you on all of the ‘shoulds’ and ‘coulds’ of the situation so you’ll likely be figuring a lot out on your own. If you’re going in for a mammogram though, now you have someone in your court! For the Love of Cups has put together 3 important questions to ask at your next mammogram appointment. Arming yourself with as much power behind your self-advocacy as possible is crucial to taking charge of your own care. You know your body better than anyone else!
Read the entire article here.
Tips For When You Don’t Know What To Say
This summer I was on a trip with friends and developed a sinus infection and pink eye. I found myself near the end of my trip, in an optometrist’s office getting an eye exam. The woman taking down my information told me that her sister also had Hodgkin’s Lymphoma. I responded with silence. Don’t get me wrong. I said “hmmm” is an affirming way, and nodded lovingly but then I said, nothing. My silence did nothing to validate her feelings about her sister’s illness or try to connect with her in any other way. I didn’t know what to say but then I made the mistake of not saying anything.
When you don’t know what to say, saying nothing is not an option.
Here are some tips for when you don’t know what to say:
[list_item]hold and sit with what you were told[/list_item]
[list_item]don’t try to fix it[/list_item]
[list_item]don’t shrug it off or minimize it in any way[/list_item]
[list_item]don’t compare it to what you think is a similar personal story[/list_item]
[list_item]say you’re sorry[/list_item]
[list_item]affirm that what they experienced is hard[/list_item]
[list_item]let them keep talking or let them change the subject[/list_item]
That’s it! You don’t have to strategize on how to fix the situation and you don’t have to try and make them feel better. You just have to hold what you’ve heard, nod, and validate that life is difficult sometimes.
What tips do you use when you don’t know what to say?
Genetics’ Effect On Cancer – And My Future
Not every cancer is random, or because of life choices. Some cancers, an estimated 5-10%, are due to genetics. This is generally referred to as inherited cancer, which means an inherited abnormal gene led to cancer. Unfortunately, it’s not always easy to tell without genetic testing whether or not you carry an abnormal gene, and genetic testing isn’t usually easily available unless you know your family has a history of some sort of cancer.
My mother’s side of the family apparently carries the abnormal gene that causes colon and rectal cancers, especially cancer that occurs at a younger age than most cases. We had no clue though, thanks to faulty information about how several relatives had died. After my mother’s diagnosis, we finally got the correct information, and discovered that her family has a history of early colon and rectal cancers. Hers was caught soon enough that it will not be fatal, but her tumor had been in the works for a very long time – since long before the age when doctors usually recommend getting colonoscopies. If we had known our family history, the doctors would have suggested she start them earlier than normal and perhaps this tumor would not have grown as it did. Odds are it still would have already been in the works, though, since it began so early.
This doesn’t have much of an impact on her, except for some understanding of how and why this happened. It does have an impact on my brother and I, however, especially since we now know some relatives had their first polyps removed as early as 35. That’s only 10 years away for me, less for my brother, and we’re starting to realize that in order to prevent this in ourselves, we may need to start colonoscopies as soon as now.
That thought is a little scary, and yet oddly liberating. There’s something in my genetics that could kill me, but there’s ways that I can prevent it from doing so. I feel equipped with the knowledge I’ve gained to be able to stop what’s happening to my mother from happening to me – I’ll possibly be able to avoid this happening at all. That likely means getting early and frequent colonoscopies, but doing so could mean living until I have great-grandchildren. That sort of knowledge is amazingly empowering; thanks to modern medicine, I can put that knowledge to use in order to have a long and healthy life.
Celebrating Joy In The Midst Of Cancer
We had an insanely busy May as a family, and not everything that happened was bad. In fact, two events were life changing moments of pure joy.
Or at least they were meant to be.
My niece was born May 13th and my husband and I were married May 17th. My mother had surgery May 4th, though, and we were still struggling through that. It felt odd, the switch between hardship and joy throughout the month. One minute we were all constantly texting and calling, checking on each other and passing information back and forth about how my mother was recovering. The next, we were texting and calling about my sister-in-law and niece, getting pictures and shedding tears of happiness instead of sorrow (she has so much hair! she’s so precious! look at that face!). Immediately after, we were texting and sending pictures of our wedding weekend, of my husband’s commissioning, graduation, and our wedding ceremony.
(Gratuitous wedding photo share…)
It was a whirlwind of emotions. There were plenty of times when I felt guilty for feeling happy during my wedding weekend. It was a weird sort of guilt, the guilt of dragging my mother out of the house to go to the rehearsal, rehearsal dinner, and wedding when she should have been home resting. But there was also a deeper sort of joy, beyond getting married and being an aunt, a deeper kind that was purely the joy that mom was there to share it all with us, the joy that she had made it through and was going to get better.
Before her surgery was scheduled, we weren’t sure if she’d make it to the wedding or still be in the hospital. I petulantly told my husband that if she didn’t make it to the wedding, neither would I. I think I told him to “marry himself, then,” when he tried to tell me I was being ridiculous. I couldn’t imagine going through that day without her, couldn’t imagine walking down the aisle without seeing her in the front row. Her surgeon was amazing, though, and made sure she was rushed into surgery before my wedding, so that we knew she’d be released and able to attend. We were all so happy that weekend, especially after my niece’s birth only a few days before.
The guilt gradually went away, because honestly I think we all needed things to be happy about.
That’s just it. There shouldn’t be any guilt about joyous events. They were all so wonderful, and they were the boost we all needed as a family. My mother has been so happy, getting daily photos of her first grandchild, seeing the photos from our wedding, knowing that we all have things to look forward to. Joy is the only reason to keep going, and during cancer you need joy most of all. Celebrate joy, never let yourself feel guilty for being happy, even as you’re struggling. Especially when you’re struggling. That’s when joy matters the most.
How Can You Help Someone With A Serious Or Chronic Illness?
If you have a friend or family member with a serious illness, you may want to help them out, but be at a loss for the best way. I can’t speak for everyone dealing with health problems, but these are the things people have done for me that have helped me most, and made me feel loved and encouraged.
Asking for help is hard, but accepting help is much easier. So instead of saying “Let me know if you need anything.” I recommend making a specific offer.
Last spring was especially difficult for me, so when a friend offered to cook dinner, I was incredibly grateful, and that feeling was compounded when I saw how much effort she put into it. She asked for a list of my food restrictions and preferences, and put together an amazing meal – main course, side dishes, and dessert. And she made lots of everything, so I had leftovers to enjoy as well. Trying to cook a healthy meal while dealing with fatigue is a big challenge (there’s a strong temptation to have a bowl of cereal and call it a day), so having that burden lifted for a few days was a wonderful gift. Not a cook? Consider bringing by take-out or a restaurant gift card.
Shopping for groceries is also intimidating when just getting through the day seems impossible. I have friends who call to ask if they can pick up anything for me when they go to the grocery store or the drug store. Knowing that a dozen eggs and some apples, or some much-needed tissues, are going to appear at my doorstep can be a remarkable relief on some days.
If a trip to the grocery store seems daunting, imagine how shoveling snow looks! During one of the big snows last winter, my boyfriend was out of town. I was on my own as far as shoveling the driveway went, until a neighbor came over with his snowblower, and cleared my driveway and sidewalk in just a few minutes, without even asking. I almost cried. Mowing grass or raking leaves will inspire the same deep gratitude (as will indoor chores like cleaning and doing laundry).
Some chores can be put off for a while – cleaning the bathroom, vacuuming the living room, doing the dishes. But dogs have to go out a few times a day, every day. If your friend has dogs, offer to walk them – not only will your friend be thankful, the dogs will be, too.
While I don’t have children, I know from my experiences as a babysitter and an aunt how tiring it can be to take care of them. Taking on childcare tasks can give your friend a much-needed rest, and their children some time to be normal kids, away from the ever-present atmosphere of illness. My friends with kids recommend a trip outside the house – to a park, a museum, a movie. And interactive gifts for the children, to help keep them occupied at home, are also high on the list; consider bringing over art supplies or building toys.
The above are all practical suggestions, but sometimes a social visit can be equally heartening. A serious or chronic illness is very isolating – people with them often have scaled back their social lives and their work lives, and it can get lonely. So go for a visit. Talk if your friend needs to be distracted, listen if they need to vent. If you’re not nearby, you can call, email, or write. Just knowing that I’m in someone’s thoughts makes me feel less lonely.
Have suggestions for other ways to help? Leave them in the comments!
A Story Your Way Kickstarter Campaign
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When young adults with young families are affected by cancer, children become a part of a complicated conversation revolving around difficult topics like wellness, cancer treatments, and quality of life. Family schedules adapt to meet the need of the parental cancer patient, and day-to-day life changes for everyone involved. Bringing children into this conversation is a complex task. With children growing up in more diverse households, it is time that books specializing in explaining a parent’s cancer diagnosis to children mimic this trend. A Story Your Way kickstarter campaign is seeking to change all of this.
NovaCarta, a non-profit based out of Switzerland, has set about tackling how best to explain to children what cancer means and how their family will be affected. The association’s maiden project, A Story Your Way, allows families to create a book reflecting their exact situation, including cancer type and family structure. These wonderful and adaptable books are created directly on NovaCarta’s website and sent straight to the family. The family selects a number of parameters including cancer type, family structure, primary language spoken at home, illustrator choice (there are 3 different styles to choose from), and treatment plan. In this way, single parent households, same-sex couples, and heterosexual couples can all have a book representing their family properly. The family’s book can explain their own cancer story to best present the topic to children.
The books will be initially available in English, French, German, and Italian with later versions offering even more language options. Later versions of this project will also be adapted for older children dealing with a parental cancer, dealing with a sibling’s cancer, and other illnesses but first, NovaCarta needs your help! Funding for the project, A Story Your Way, is currently underway on kickstarter! To find out more about the association, you can visit their website here. If you are interested in helping fund this fantastic project, you can visit their kickstarter campaign here.
Here is more information about the project, straight from NovaCarta…
Explaining illness and its consequences to children is often a difficult and complex endeavour. A simple approach rarely reassures a child. It is therefore important to thematize the situation, the new daily routine and the specific changes the patient will go through. Studies done over the past 20 years show the importance, for children’s well being, to include them in open discussions concerning a parent’s illness (see bibliography). These studies explain that parents often find themselves lacking the appropriate means to have such discussions.
The importance of openly communicating about a parental cancer with children is imperative for their well being. Children who receive clear information throughout the period of a parent’s illness are less anxious than those that do not. For certain illnesses, like breast cancer for example, dedicated books exist to treat the subject matter with kids. However, these books focus on one specific case and moreover reflect a standard family structure. However, the heterosexual married couple with kids reflects an outdated family configuration.
We know that in the United-States, 24 % of cancer patients have dependent children (the number goes as high as 33 % in the case of breast cancer).
Some extra statistics on family :
– 1.9 million single parent households in the UK in 2013 http://www.ons.gov.uk/ons/rel/family-demography/families-and-households/2013/stb-families.html?format=print
– 28 % of children in the US live with one parent. https://www.census.gov/prod/2013pubs/p20-570.pdf pg.23
– 16.4 % of same sex couples have children (idem pg.24)
We can see that today children are growing up in families of many different configurations. Now, while these families may face discrimination in certain aspects of their lives, cancer doesn’t discriminate and can unfortunately affect their lives. Our book can be adapted to all family structures and cancer types, so families that have as of yet not been represented in this type of literature can get a book they relate to.
Novacarta will use the ease of print on demand technology to create individualised books. By preparing a multitude of scenarios covering the problematic involved in cancer, Novacarta will select the appropriate ones for each patient, thus providing them with a story that best coincides with their specific situation.
A semi-automatic work flow will print the book, on demand, for the patient and then delivered by mail.
Barnes, J., Kroll, L., Burke, O., Lee, J., Jones, A., Stein, A. (2000). Qualitative interview study of communication between parents and children about maternal breast cancer. BMJ, volume 321, 479-482.
Billhult, A., Segesten, K. (2003). Strength of motherhood : nonrecurrent breast cancer as experienced by mothers with dependent children. Scand J Caring Sci, 17, 122-128
Forrest, G., Plumb, C., Ziebland, S., Stein, A. (2006). Breast cancer in the family – children’s perspective of their mother’s cancer and its initial treatment : qualitative study. BMJ Online First (bmj.com). DOI:10.1136/bmj.38793.567801.AE
Keeley, D. (2000). (2000). Telling children about a parent’s cancer – parent’s want help but don’t get it. BMJ, volume 321, 462.
Kennedy, V.L., Lloyd-Williams, M. (9 janvier 2009). How children cope when a parent has advanced cancer. Wiley InterScience (www.interscience.wiliey.com). DOI : 10.1002/pon.1455
Kroll, L., Barnes, J., Jones, A., Stein, A. (1998). Cancer in parents : telling children. BMJ, volume 316, 880.
Muriel, A.C., Rauch, P.K. (2003). Suggestions for Patients on How to Talk with Children About a Parent’s Cancer.
Rauch. P.K, Muriel. A.c. (2004). The importance of parenting concerns among patients with cancer. Criticial Reviews in Oncology Hematology, 49, 37-42.
How To Care For A Caregiver
Caregivers are often found behind the scenes. While the patient receives the well wishes and the warm thoughts, the caregiver is always on call. I can tell you that being a caregiver is exhausting. When my mother was ill, I played graduate student 3 days a week and present caregiver for the remaining 4. I was up in the middle of each night to help care for her and I was on call each day to get her ready, spend time with her, and take her where she needed to go.
Here at Lacuna Loft, we recognize that young adults act as caregivers and that often, their friends don’t quite understand the grand responsibility this entails. Being a caregiver is really hard and is made even harder when your normal, same-aged young adult support system doesn’t know what to do because they haven’t faced anything like this before. Here is the truth though…being the friend of a caregiver is hard too. Not knowing what to do to help support a caregiving friend can feel really awful. Your young adult caregiving friend isn’t around as much anymore, what they are facing each day may make you uncomfortable, and they may not have a lot of emotional energy left for your relationship. Here are a few tips that we’ve put together, to help you continue to relate with and support the young adult caregiver in your life.
How to Care For a Caregiver…
[list_item]offer to come over and help around the house for a few hours.[/list_item]
If your caregiving friend tells you not to bother or that the house is a mess…just nicely say that you don’t mind because you would really like to come over. Caregiving can be really isolating…especially when the caregiver’s group of friends have trouble relating to the situation at hand. Your presence and support around the house will be very much appreciated.
[list_item]let your caregiving friend rant.[/list_item]
It is likely that your caregiving friend deals with so many emotions through out the day. Caretaking for a loved one who is experiencing health issues is a really difficult thing to manage, both physically and emotionally. Allow your young adult caregiving friend to just sit and complain. Let them go through a situation, blow by blow, and feel listened to.
[list_item]don’t judge your caregiving friend’s rant.[/list_item]
Near the end of my responsibilities as caregiver for my mother, her short term memory was almost non-existent. One day, she had lunch and then I helped her move from the table to a chair. I wanted her desperately to take a nap. Instead she explained how she really wanted a sandwich. After preparing lunch, cleaning everything up, and moving her from the table to a chair, I did not want to make a sandwich and repeat the whole process. She asked me why I was refusing to do something so simple for her when she could not do it for herself. I don’t remember what I said to her but I do remember walking straight out the front door to find my father, working in the yard, so that I could rant to him. In this case, it was caregiver ranting to caregiver, but it worked. My father listened and understood. He didn’t judge my frustrations with such a simple issue because he understood that the act of taking care of my 56 year old mother when she could no longer take care of herself was heartbreaking to all of us. Each caregiving act was tainted with the realizations that things “should” not be this way.
[list_item]ask if your caregiving friend’s family might need help with family meals…and then ask again.[/list_item]
If you would have asked my family early on in my mother’s health decline, if we needed help with grocery shopping or meal preparation, we probably would have told you no. Then a mother in my little brother’s boy scout troop set up a meal train for my family. Each day (or a few times a week), a full meal was dropped off at our house. If we weren’t at home, my dad kept a cooler on the front porch where the meal could be left. For months, we did not have to go grocery shopping for more than breakfast and everyday eating and home essentials (think milk and toilet paper). This created so much more time for my family to take care of ourselves and my mother.
[list_item]ask directly if something like GiveForward would be helpful.[/list_item]
Money is quite the taboo subject in the United States. Knowing what is ok to say and what is not ok to say in tough situations can make approaching this money subject even more difficult. (We have talked about this a little bit before, here). I have found, both in caregiving for my mother and in being a cancer patient, dancing around a subject just makes things harder! If you are unsure, just ask! If you know of someone going through a crisis, or someone caregiving for a family in crisis, ask if a service like GiveForward might help them out. GiveForward helps fundraise for medical or vet bills and they provide a lot of support throughout the whole process.
[list_item]keep inviting your young adult caregiving friend out, even if they rarely accept the offer.[/list_item]
While I was caregiving, I lived 3 days a week in one state and 4 days a week in another. Usually weekends were spent away from friends, at home with my family in my caregiving role. This meant that weekend, young adult activities were pushed to the way-side for months. Some of my friends understood that, even if I didn’t have a lot of time or energy for them, I still loved them and needed them in my life. Other friends couldn’t understand this and we went our separate ways. This is one of the realizations that occurs when something life changing occurs. Being a caregiving is isolating. Keep asking your caregiving friend out for dinner/drinks/whatever, even if they never happen to be in town when the event occurs.
[list_item]ask if your caregiving friend might need any additional help caregiving…and then ask again.[/list_item]
My dad and I thought that we had everything under control while we were caregiving for my mom. Week after week though, we became more and more drained by the responsibility. Eventually, I persuaded my dad to hire someone from a company called Visiting Angels. While their website explains that they specialize in elderly care (and my 56 year old mother was not elderly), they can help you take care of anyone who cannot take care of themselves. Someone from Visiting Angels came over for just a few hours each week. Having someone else over to help get my mom ready, take her to the bathroom, or cook a meal was absolutely fabulous. I cannot explain how much relief this brought to me and my father. With someone helping out for even just a few times each week, we could just spend time with my mom while not feeling drained by also carrying out each caretaking responsibility.
[list_item]encourage your caregiving friend to keep you up to date on their schedule/needs/wants/worries/etc. but don’t get hurt if they don’t.[/list_item]
Similar to the item above, sometimes your caregiving friend will be present (physically and/or emotionally) and sometimes they won’t be. I had friends who understood this…and others who just couldn’t. My days as a caregiver were exhausting and I couldn’t find the emotional energy to keep everyone in my life up to date with a phone call, email, or text message. I loved it when people called and checked in with me and I did my best to get back in touch with people that I hadn’t talked to in a few weeks. Like I said before, being a caregiver is isolating. Keep getting in touch with your caregiving friend, even if they don’t always reciprocate.
Do you have any others that you’d like to add to the list? Let us know!
Have You Heard Of GiveForward?
Today we are sharing about a fantastic company out there called GiveForward! www.giveforward.com is an online fundraising platform, that helps people raise money to pay for medical (or vet!) bills! Each fundraising campaign is assigned a Personal Coach from the GiveForward team. This person helps you start a fundraiser and offers advice and support along the way as well. GiveForward works really hard to make the fundraising process super easy! To date, 65,000 people have created a fundraiser through GiveForward and over $90 million has been raised! One thing I experienced while going through my mother’s treatments and then my own…people ask, How can I help? Well that answer can now be easily answered for everyone out there feeling the financial strain of going through a medical crisis.
GiveForward helps you start your fundraiser and share your fundraising page with your social network. The fundraising pages allow you to tell your story and ask for exactly what you need. You can start a fundraiser for yourself or someone you know! (just click on the image below!)
Fine Print – Links throughout this post are referral links. If you initiate a fundraiser, Lacuna Loft receives a small commission. Please understand however, the words and opinions stated above are those of the author.