The Thing About Cancer + Treatment Is…

young adult cancer and treatment

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During the month of May, we’ll be bringing back some of your favorite posts in groups of 5!  Today, we even have a bonus, 6th post!

Today, we’ve got 6 GREAT posts focused on getting to the nitty gritty of young adult cancer and treatment.

[/spb_text_block] [spb_single_image image=”14147″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/ct-scan-tips/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14150″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/food-tips-for-chemo/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14145″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/caregiver-guilt/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14146″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/easy-ways-to-talk-about-poop/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14148″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/whenever-i-feel-anxious-i-wiggle-my-toes/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14144″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/cancer-survivor-tattoo-finished/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image]

The Thing About Cancer In Your 20s + 30s Is…

cancer in your 20s

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During the month of May, we’ll be bringing back some of your favorite posts in groups of 5!

Today, we’ve got GREAT posts focused on getting to the nitty gritty of what it is like to have cancer in your 20s and 30s.  Today we’re sharing some oldies but goodies!

[/spb_text_block] [spb_single_image image=”14018″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/cancer-in-your-20s/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14017″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/10-more-things-about-cancer-in-your-20s/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14021″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/three-years-cancer-comedy/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14020″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/the-process-of-surviving/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14019″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/donuts/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first last”][/spb_single_image]

A Young Adult Cancer & Chronic Illness Writing Group!

writing group

Lacuna Loft is incredibly excited to introduce you to a new program that is starting here in mid-March called Unspoken Ink! Unspoken Ink is a creative writing group, designed to help address issues that transport us from initial diagnosis into the new normal and survivorship. The group will consist of 8-10 people, and will meet over 10 weeks for 2 hours each week over google hangout video chat.

If you’re interested in joining us, read more below and fill out the form!  Our Spring Session is forming now!

For the Spring Session of Unspoken Ink, we will be forming a group of 8-10 survivors. Caregiver groups will start slightly later in the year. If you are not able to attend the Spring Session for any reason (you’re a caregiver, the group was full already, the time didn’t work for your availability, etc.) please fill out the form anyway and we’ll put you on the list for future writing groups!

—
Welcome to the Unspoken Ink writing group! Jen and Mallory are so excited that you are considering joining us!

This group is designed to take you on a journey through your cancer or chronic illness diagnosis and into your survivorship with a small group of your young adult cancer/illness survivor peers. Each 10-week program consists of a weekly writing session attended via google video hangout. We will get to know one another in an intimate, 8-10 person setting and address issues that transport us from initial diagnosis into the new normal and survivorship.

The Unspoken Ink writing group uses a creative writing method (Amherst Writing and Artists (AWA) Method) wherein the facilitator provides a writing prompt and you can use that prompt in any way you’d like to create a story over a set amount of time. Once we’ve finished our writing (yes, the facilitator writes too!), everyone is given the opportunity to read their writing out loud. Hearing your own story and hearing someone else’s teaches us all so much about our experiences and our stories. Once the piece is read, we reflect on the writing – what did we like, what stood out, what do we remember. Everything is considered fiction so we do not respond to the writer as a support group may, but keep the focus on the writing.

Sometimes the prompts are about cancer/illness, sometimes indirectly related to cancer/illness, and sometimes not about cancer/illness at all. Above all, the writing program emphasizes that we are more than a diagnosis.

Our Spring writing group is forming soon!

Some logistics:
– The writing group meets for 2 hours each week, for a period of 10 weeks. A commitment to attend each week is important to group continuity and in creating a safe space. Please be on time. The group will begin in mid-March with a TBD meeting time.
– Each participant will receive a name@LacunaLoft-writinggroup.org email address to use when attending each writing group session. At this email address, you will receive a weekly invitation to a google video hangout where the writing group session will take place. These email addresses will help preserve individual privacy if desired and will make meeting as a group via video hangout easier.
– Following each weekly session, you may decide to submit your writing to Mallory (mallory@lacunaloft.org) for publication on LacunaLoft.org in their Young Adult Voices program section. This is not mandatory!

Let’s Talk About Sex Baby!

sex during cancer

Geraldine is a lovely lady. In her 60’s. Well spoken. Wise. She’s one of the Breast Care Nurses who’s called me in for a little chat and a check up.

“Now I need to ask you Lara. Do you have a partner?”

“No. (Dramatic pause) I have a Lover.”

I said this purely in the hope of shocking Geraldine and to make her gasp or at least squirm in her chair. Course I don’t have a bloody lover! Well I sort of do – but I don’t think once a month counts. Right?

Geraldine doesn’t bat an eyelid. Doesn’t even flinch a millimetre.

Damn it.

Geraldine 1. Lara 0.

“You need to have regular intercourse throughout chemotherapy to keep everything in working order and the juices flowing so to speak. I recommend you get a vibrator.”

I think I’m gonna vom. Now I’m the one squirming in my chair.

Geraldine 2. Lara 0.

I can’t think of anything more revolting. A cold, clammy, glittery dildo that stinks of rubber and has a tiny pink rabbit having an epileptic fit attached to the side. How thoroughly sexy. I rather use it to stir my custard thanks. But if you insist Geraldine. I mean so far the NHS have come up trumps. A free wig. A complementary silk Hermes scarf designed by Stella McCartney. So why not give out free quivering wangers to all cancer patients? Or even better, free sessions with hunky men who are trained sexual ‘therapists.’ Oh and on top of that, throw in a couple of Merkins, seeing as chemo makes ALL of the hair on your body fall out if you know what I mean. Thank you please.

After my heart to heart with Geraldine I text my ‘Lover.’

‘I’ve just been to see my nurse and she says I need to have LOADS of sex during chemo to keep everything in working order. THIS IS A MATTER OF LIFE AND DEATH! You would be saving my life x’

No pressure or anything.

A few minutes later I get a reply.

‘Happy to oblige! x’

Being a cancer patient sometimes does have it’s perks.

This post first appeared here.

A Young Woman’s Breast Cancer Story Told Through Film

When I was diagnosed a good friend of mine leant me her camcorder and gently encouraged me to film myself throughout my treatment. At first I thought ‘who the hell wants to watch that!’ but I soon picked the camera up and treated it like a diary. Every time I wanted to release an emotion or express a feeling I could just talk to the camera or record a voice memo on my phone. It became so cathartic. Sometimes you don’t want to talk to anyone because that person might not understand or might get too emotional or too sympathetic when all you want to do is scream, swear and cry hysterically in private.

I didn’t look back at any of the footage until a good few months after I’d finished all my treatment. I wasn’t sure what to expect and was quite nervous of it conjuring up bad memories. But in fact there were loads of great memories! Cancer can be very funny. I’m a pretty basic human being and I never tire of toilet humour!

Breast Cancer Awareness Month every October is a wonderful thing. It raises awareness and a heap of money but I couldn’t help noticing pink stuff everywhere. Beautiful celebrities wearing pink lacy underwear, pink merchandise, pink food, pink smiles. Cancer is anything but pink and fluffy. And I wanted my film to show the truth. How one day you can be feeling wonderful and glamorous in your wig and painted eyebrows but the next day you feel like death warmed up and you look like Gollum!

But I also wanted to make this film to show fellow cancer patients out there that you can get through this and you’re not alone. It’s OK to have rubbish days where you can’t get out of bed and hate the world but there are always days when you can put on your sequins and purple wig and live the hell out of life!

How have you shared your survivorship story with others?

10 Things You Can Do To Make Waiting Purposeful

I played so much Angry Birds while I was going through chemo, that now, when I see a picture of an Angry Bird, I start to feel a little green around the gills. Actually, as I write this, just thinking about Angry Birds makes me a little sick to my stomach.

Once I finished treatment and found I could no longer play my favorite time-killing app, I had to try and think of some other ways to pass the time while waiting around to be seen.  Here are some suggestions for making the most of your time.

1. Make Lists
I pull out my phone and make all sorts of lists: questions for my doctors, shopping lists, to-do lists, places I want to visit, recipes I want to try, possible birthday gifts for family members, books I want to read…I just made a list of lists I make—meta.

notes

2. Self-Talk
Please don’t do this out loud or you may find yourself leaving with a few extra medications. No, self-talk is like having an intentional, internal monologue. This is time where I sit and think positive thoughts, meditate on reassuring quotes, or try and logically talk myself through issues weighing heavily on my mind.

talking-to-yourself

3. Do Something Creative
People who can knit or sew are, in my mind, wizards. I don’t have the kind of magic in my hands to be able to do that, but I can doodle, cross stitch, or my personal favorite—plug headphones into my phone to make beats and write songs with Garage Band Studio.

knitwizard

4. Text
Having never been a phone person, this is the kind of thing I don’t normally think to do, but when I find myself with phone service and extra time in a waiting room, I try to check in with people.

funny-best-friend-texts-11

5. Clean Out Your Inbox
Being the proud user of a Hotmail email address from 1996, I get a lot of ads in my inbox I don’t normally take the time to delete.

inbox

6. Clean Out Your Photos
So…much…storage… If you regularly take photos, but don’t regularly delete them off your phone, it’s a good way to spend a few minutes. And don’t forget to delete them from the “deleted” photos album!

DSCF2133

7. Seated Kegels
Not just for women…

kegels-for-men-too

8. Click-to-Give
That’s right you can do charity work…without spending money… There are so many click-to-give charity sites nowadays, where you click a button and some people will donate money just because you showed your support for a cause by caring enough to click.

clicktogive

9. Conduct Research
Chances are there are other people in the room where you are waiting. You can ask them questions about things you want to know more about. Even if they don’t know the answer to your question, it could be a good way to strike up a productive conversation.

talk-to-strangers

10. Take a walk
I don’t know why more waiting rooms don’t have treadmills, but if you arrive for your appointment, and there seems like there is going to be a long wait, you could ask the person at the reception desk how long they think it will be, cut that number in half and take a little walk.

Cropped view of a pair of woman's feet wearing sports trainers and walkingimages via here, here, here, here, here, and here

How do you like to spend your time waiting?  Check out our other keeping busy while waiting posts here and here!

It Should Get Easier

thyroid cancer

Eight years on, I know the drill.

After the interminable wait in the radiology department waiting room, I’m led to a small room with a narrow bed next to an ultrasound machine.

I dutifully wore a v-neck sweater so I wouldn’t have to change into a gown. After removing my necklace and earrings, I lay down on the bed, pillow positioned under my shoulders to maximize discomfort and neck accessibility. Unlike the (sometimes) happier sonogram rooms of obstetricians’ offices, this room features no screen on the wall with which to follow along – not that the angle of my head and neck would allow for screen watching anyway. I stare at a spot on the ceiling behind me.

As the ultrasound tech preps the computer, he asks the same questions as those before him:

“Have you been here for an exam before?”

“Yes.”

“Why are you having this sonogram?”

“Thyroid cancer.”

“When was your diagnosis and your thyroidectomy?”

“November 2007. January 2008.”

January 2008. January 2, 2008, to be specific. Eight years ago this month. I’ve probably had at least 25 neck ultrasounds in the time since.

This process should get easier. But it hasn’t, not yet. I don’t know that it ever will, now.

This is technically a routine test, the sonogram that I get twice a year before meeting with my endocrinologist. My last many such sonograms give me no reason to believe that this one will be anything out of the ordinary.

But as I lie on the bed, my head craned up and to the left as the warm ultrasound gel is applied and ultrasound tech slowly moves the gizmo along the chain of lymph nodes under my right ear, I can’t help but wonder what if. What if this is the time that the trend of “nothing to worry about here” changes? What if rather than the radiologist’s reading of “no measurable change” I receive a report of “more follow-up needed”?

I remember that in my haste this morning, I didn’t give my son a kiss goodbye. Why didn’t I give him a kiss goodbye? Why did I rush?

The ultrasound machine beeps as the tech clicks, registering a picture for the radiologist to assess. I never know whether to worry about the number of clicks and beeps. Do more of them mean there are more potentially suspicious lymph nodes in the pictures? Or do they simply mean that I’ve gotten an especially thorough technician?

Sonography is both an art and a science, my doctor has reminded me. What one sonographer picks up in one exam, the next may not see. Instructed to turn to the right, I stare at the clock on the wall and the minutes tick by. Have I gotten a particularly artful technician today? Or a new and inexperienced one who needs more time to determine what he’s seeing?

I can’t know the answers to those questions. And I can’t ask questions, because the technicians aren’t supposed to tell you what they’re seeing. (Sometimes they do, anyway. I’ve been on the winning and losing side of those technician diagnostics, and I’ve decided that I’d rather wait for the official radiology report.)

So I keep quiet, waiting for the beeping to stop, to be given the OK to get up, to wipe off the ultrasound gel that has now melted and oozed down my neck, to put my jewelry back on. To be told that my doctor will get the report in a day or two.

To open the door and head back into my regularly scheduled day, already in progress.

I wish this would get easier.

Go here to see what it is like having a CT scan.  Have you had a sonogram before during your cancer survivorship?

Easy Ways To Talk About Poop!

In one of our 10 Things about Cancer in your 20s (and 30s) posts, we mentioned how you will get comfortable talking about your poop if you ever face cancer as a young adult.  Whether you’re ready or not, pooping is an important factor in how you’re dealing with cancer treatment and its side effects.

I grew up in a household where no topic was ever off limits and weird conversations were common place.  We frequently had discussions on how members of the house with a uterus seemed to be better at finding lost items.  I remember the first time I told my husband that he should just stop looking for his phone because my uterus could help.  Needless to say he gave me a very weird look!

When I was going through cancer treatments though, poop still felt like a taboo topic despite the fact that everyone at the hospital seemed to be interested in whether I was pooping, how often, and what it looked like.  One time in particular, I was on the phone with a nurse because I was having issues and couldn’t figure out what to do.  This calm, patient woman kept asking me to describe to her what my problem was.  Without going into too much detail, I needed to go, couldn’t, and it hurt.

But that’s the issue right?!  We never go into detail in normal life about poop so how can we be expected to just flip the switch and know how to talk freely about it just because we now have cancer?!

My husband and I developed a few easy tricks to at least get the conversation started…

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[list_item]having trouble going, but can’t? not enough pooping? (This is constipation) ….
code word: the Stops![/list_item]
[list_item]too much pooping?  (This is diarrhea) …
code word: the Gos![/list_item]
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It probably sounds silly, but this really helped during my chemo treatments.  I could make a funny face, say either ‘the Stops’ or ‘the Gos’ and my husband immediately knew what to go and grab for me to help fix the problem.

In both cases, the solution is to talk to your doctor or nurse!  Someone on your oncology team can help you.  Eventually you will develop a system that works for you to manage your particular side effects.  Having trouble talking about it yourself?  Develop a system of codes, like we did above, that describe some of the base problems and have your caregiver start the conversation for you.

And, in the words of Cecilia:

So tell your doctors, nurses, caregivers, friends, family, & realistically, whoever else you want about when you poop & when you’re struggling to poop. Tell them if it hurts, if it’s too soft, if it’s oddly colored, if it’s too often, just tell them about your poop.

Have you used code words to talk about uncomfortable issues that cancer causes?  Let us know!

Helpful Tips For Your CT Scan Day

CT scan tips

CT scans can be a little daunting if you haven’t had one before.  A few weeks ago I had my 11th CT scan, leaving just one more (*knock on wood*) before I’m DONE.  We’ve posted about CT scans before and went through what a typical CT scan process is like.  You can read that post here.

Today we’re going to get straight to the nitty gritty and let you in on some helpful CT scan tips to make the scan easier and more comfortable!

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[list_item]be on time.[/list_item]
This can definitely reduce some of the stress involved with heading to the hospital for a scan to look for cancer…an event that is kind of emotionally heavy regardless of the outcome.  Being on time helps you stay on schedule with the other appointments you probably have that day and it makes everything feel less hectic.

[list_item]have a bottle of water.[/list_item]
The contrast used in a CT scan needs to be flushed out of your system once the scan is complete.  The way to do this?  Water!  You’re probably already thirsty from not being able to drink water for a few hours prior to the scan, but nevertheless, carry around a bottle of water for the rest of the day and drink, drink, drink!  Rehydrating is key.

[list_item]dress appropriately.[/list_item]
Those awful hospital paper outfits are…well…they are awful!  For a CT scan, if you avoid wearing metal you can usually keep your own clothes on.  Wear pants without a metal zipper and button.  Wear a sports bra or skip the bra altogether!  Have a sweater handy that doesn’t have a metal closure.  You get the picture…no metal and you’re good to go.

[list_item]have a sweater or jacket.[/list_item]
Hospitals are cold and you’re body is running low on food and water before the scan making you even more susceptible to feeling chilly.  Have layers (without metal) ready to go.  Plus, sweaters or jackets can serve a second purpose as well.  When they start an IV, having some fabric bunched up under the tourniquet can make the process a bit more comfortable.  I roll up my sleeve on the arm they use for the IV and the tourniquet goes around all of that bunched up fabric.

[list_item]bring a buddy.[/list_item]
Typically you’re not sedated for a CT scan so you can bring yourself.  Being alone though can make the whole experience that much harder.  Bring a friend, have them bring something to entertain themselves while you’re being scanned, and you can look forward to seeing their bright, shining smile back in the waiting room once you’re done! (Or you can look forward to seeing their bright yawn if your scan is early in the morning)  😉

2015-09-16 06.49.49-1

[list_item]know that this is a big deal.[/list_item]
While sometimes others in your life (and maybe even yourself) may start to consider your medical appointments and scans to be routine…they are not!  There is very little routine about a young adult having cancer and every step along the way is allowed to require emotional consideration and space.  Try not to feel too weighed down by the reason for the scan, but allow yourself some extra TLC if you need it.

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Do you have any other CT scan tips that I have missed or forgotten?  I’d love to add them to the list!

Have You Heard Of Chemo Dates?

chemo dates

Having young adult cancer can definitely put a crimp in your dating life.  If you thought dating as a young adult was hard, add in loss of hair, other body changes, fatigue, and everything else cancer brings into the mix and you’ve got an emotionally complicated situation.  Everyone deals with this in a different way.  I’ve talked with survivors who seemed totally unphased by the whole ordeal, survivors who shut themselves away until they felt more like themselves and more ready to handle the world, and many options in between.

Have you heard of chemo dates?  Diana Mendoza, a breast cancer survivor, explains that it’s “when two people who have cancer, book their chemo sessions on the same day and then go out to dinner or do something fun afterwards.”  Diana used these chemo dates between herself and another young cancer survivor as a coping mechanism during chemo.  She says, “these dates allowed me to believe I was still beautiful despite my physical and emotional scars. Cancer had already taken so much from me. I wasn’t going to allow cancer to silence that coquettish personality I have.”

Cancer takes so much, forcefully defines so much, and hinders so much.  Whatever you need to take back control over a piece of your being, do it!

Would you try chemo dates?  Did you use another tactic to regain control over your life?

If you’d like to read more of Diana’s writing, check out her blog.