Tips For When You Don’t Know What To Say

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 type=”like”]
[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]nod[/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]
[/list]

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.

image via

Celebrating Joy In The Midst Of Cancer

celebrating joy

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.

jp0494(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.

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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.

 

Bibliography

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.

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How To Care For A Caregiver

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.  

Continue reading

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!)

Raise Money for a Loved One. It's Quick, Easy, and Secure on GiveForward.com

 

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.

Check Out Our Pre-Launch Content!

While our blog here at Lacuna Loft is definitely still in its growing phases, there were a handful of posts that went live before our official launch.  We thought, on this lovely Thursday, we would point you back to those posts that you might have missed!

[list type=”like”]
[list_item]a really cool DIY project decorating mugs (you could do plates or vases too!)[/list_item]
[list_item]a post about buzz cuts and hair loss[/list_item]
[list_item]starting to learn the process of surviving[/list_item]
[list_item]some tips on how not to say the wrong thing to a young adult in crisis[/list_item]
[list_item]free, printable puzzles to take anywhere[/list_item]
[/list]

Happy Thursday!

How Not To Say The Wrong Thing To A Young Adult In Crisis

Learning what to say and what not to say to someone dealing with cancer or other medical crisis isn’t always easy….especially if you have never gone through something similar yourself.  Young adult patients or caregivers often find their peer group to be ignorant of the challenges of directly dealing with illness.  It is easy in these situations to attempt to be supportive and to accidentally fail.  As young adults we are often quite focused on how our own budding careers, relationships, homes, etc. are doing…how are they evolving and responding to our growing adult hood.  It is a difficult lesson to learn when things are and are not about you.  It is difficult to learn how not to say the wrong thing.

I heard an entire barrage of inappropriate things when I was dealing with my mother’s cancer and then my own.  From a caregiver’s perspective, when my mother was dying, I had friends who would come into town, we’d go out to lunch, and they wouldn’t mention anything about my mom….you can’t just ignore the big horrible thing happening in someone’s life.  From a patient’s perspective, while I was going through chemo, I had a friend call and spend 20 minutes complaining about how much she hated a class she was taking before even asking me how I was feeling.  In those situations, it was about me.  I needed support and comfort.  Now that I am officially in remission, there are many more times when the situation I am in is about someone else and not myself.  In these situations it is my turn to make sure that I am being supportive and comforting.

Here is the real problem though…Many of the what not to say rules are dependent on the individuals involved.  What might seem very supportive and awesome to one person may come off as dismissive and presumptuous to someone else.  For instance, I really didn’t like it when people told me that I was looking great.  A few moments that stand out most prominently in my mind are ones when someone told me that I looked fantastic and I was actually feeling horribly sick.  Another individual may find this comment about how wonderful they look to be uplifting.  A good, general rule of thumb is to ask questions instead of giving responses.  Learning how not to say the wrong thing is so much easier when you take the lead from the person you are with.

Instead of…

wow, you look great!

try…

how are you feeling my dear?

This allows the patient or caregiver to feel comforted and supported while also being able to decide how they feel and look before someone tells them otherwise.  When so much of a person’s life is being decided by the cancer or long term illness that they are dealing with, it is really powerful to be given control over something…even if that something is just deciding how they feel.

For some other reading on what others have said about what not to say to someone with cancer or in crisis, you can find my favorite article here and another really good one here.