Thoughts For Tuesday

I have been reading a lot lately. Not much of the latest hot fiction, or the classics, but more about cancer. It’s been kind of all consuming (understandably so). I find myself wanting materials I can relate to. Things that will not just educate me, but mentally prepare me for what’s to come. Things that make me feel normal for going through what I have already experienced.

I’ll eventually go over some of this stuff, but today I just want to share something that I’ve read several times in several different sources. Each time, it never ceases to strike a chord deep down inside me.

From the Livestrong website (statistics are American):

Each year, nearly 70,000 young adults between the ages of 15 and 39 are diagnosed with cancer.

In contrast to those younger and older, survival rates for young adults have not increased since 1975, possibly due to factors such as lack of insurance, less participation in clinical trials and delayed diagnoses.

In addition, young survivors often are caught between the worlds of pediatric and adult oncology. They may face a variety of unique long-term effects that will need to be addressed over their lifetimes, such as: reentry into school or the workforce, insurance coverage issues, infertility as a result of treatment, neurocognitive effects or secondary malignancies.

Every single one of those points is something I’ve read further into. The fact that I had to request to be put into the oncology ward and not pediatrics even though I’m 25. The fact that I was barely two months into a new job and not yet privately insured. How many 20-somethings do you know who have steady jobs and full coverage? Then there’s also the fact that many physicians shrug off the symptoms of younger people until cancer is found at Stage iV or more, when they are already very, very sick. And don’t think I don’t worry every day about the final three points.

Anyways, some things to think about this Tuesday morning. The more people thinking about these things the better.

About these ads

Posted on July 12, 2011, in Uncategorized and tagged . Bookmark the permalink. 39 Comments.

  1. Definitely good things to get thinking about! It is kind of like other diseases being studied in middle aged men- so little medical research is done on women and younger people… (for understandable reasons, but that doesn’t make it any less of a thinking point)

    I am shocked that they would consider putting you on the pediatric ward- that is kind of ridiculous.

  2. Although I am the last person who should ever say this (in a pot calling the kettle black kind of way) … Try not to worry. I won’t say don’t since I’m sure it’s impossible, but try.

    I am now feeling the effects of not having full insurance like I used to and it’s given me a lot to think about. Although I do know this – I am very thankful for Canadian health coverage. Last week after my doctor’s appointment I was sent for more than 30 x-rays and I couldn’t even imagine what the cost of those would be if I had to pay for them myself.

    • I know. Even though paying for drugs sucks, I can’t even begin to imagine if this scenario was playing out in the U.S. The three week hospital stay, two surgeries, and dozens of other tests would be like three years salary.

  3. Thanks for continuing to share your journey. There are a lot of us who are rooting for you!

  4. ahhh, journalist Susan is here. hello there.

    this is a brilliant thing to have people thinking about. it’s sooo scary to think that sooo many young people are dying because of these issues!!

  5. Michael Paciocco

    I can understand how you feel about being the youngest one in the ward and your concerns about young people facing serious illness. It’s definitely something most people aren’t aware of, and fewer people even try to understand the implications of. I remember reading an article about young adults recovering from cancer and having troubles adjusting back to getting in the workforce because they had “lost time” compared to people in their age bracket, and they were a leg down in terms of finances, and their personal lives not doing as well by comparison.

    Then there were the comments on that article, which made me both sad and furious at the general public, or what passes for it in online commentary.

  6. Really, really important things to think about, you’re so right. Why is it young people aren’t viewed as important as older people when it comes to debilitating diseases like cancer? It shouldn’t be like that, not at all- but why is it so? Sounds like something you could work on as a writer once you’re out of that ol’ oncology ward :)

    xo

  7. I know it’s hard to find any positivity in all of this (like Morgan said, it’s impossible not to worry), but if there’s ANY positivity to be found at all, it’s in the fact that we’re all pulling for you. There’s an extraordinary number of prayers being said for you every day, and we’re all wishing you the best possible outcome. This might sound like bullshit (especially to someone who really does have cancer), but I’ve heard of some cancer survivors saying that their belief in getting better is what helped them survive. Please believe in yourself, Susan! As corny as that sounds. You’re a strong girl. :)

  8. A lot of things to think about, and it makes me angry that you are in this position. You may have looked into it but my co-worker was talking about the Canadian Cancer society and how they help cover some medical costs. I don’t know the details, you likely know much more, but I thought I should say something just in case.

    • Yes, we’ve looked into it. There are some options from the Cancer Society and the government. But it kind of works like student loans – and all the factors that disqualify are present, even though I still need the assistance.

  9. It’s definitely upsetting to read about how crappy health policy is. I’ve read a bit about how they do things in Sweden and the Netherlands, and they seem to have a decent system. That being said, I do think it’s really tough for policy-makers to do everything they want to do with a limited amount of funds and I think decisions are more often than not the lesser of two evils.

    Then I think about the AIDS epidemic in Africa and how lucky we are, even with the insurance crappola, costs, etc. to even have a shot in hell.

    Thinking of you as always dear! Stay strong!

  10. I bet sitting and waiting for your diagnoses are the worst – because you have all these things in your head.

    You might enjoy this blog. She is a beautiful Canadian (actually from a town 45 mins from me) – it’s her story of her cancer journey, and I know when I read it (beginning to end) it made me realize that a lot of her thoughts/ideas were things I would want to think if I had cancer. She was very positive, but also very real.

    Let me know if you get a chance to read it. :) http://babywillyoulovemewhenimbald.blogspot.com

  11. Those are important things to think about. Hopefully things will be changing for the better with more awareness! It is fortunate that you are in Canada in many ways. I am lucky enough to have health insurance that is pretty decent. If not I would have paid over $2000 in bloodwork over the last month alone! Then again I pay $400 a month for the coverage not counting what my employer puts towards it. Health care is so pricey!

    I’m keeping you in my prayers!

  12. That kinda sucks ass. You will find a way around the obstacles though- it’s the way you are :-)

  13. I feel you … I’m a 30-something who has been employed with the same company for more than 11 years, but since I’ve been going contract to contract without a permanent position, I still have no insurance coverage. I often find myself avoiding going to the doctor because I know how expensive medications are, until someone knocks some sense into me of course.

    I only recently learned about so many possible (and don’t forget they aren’t for certain!) long-term side effects of chemo and radiation. Wish you nothing but the best, and hope you don’t have to deal with any of ‘em!

  14. Hi Susan, I thought you might find the following video series useful – http://www.cancerview.ca/thetruthofit. It is a video series that features Canadians talking about their experiences with cancer. There are a wide range of ages in the series, so not everyone may be someone you could relate to – just wanted to pass along. You can watch full length interview or by theme – e.g. getting the news, being your own advocate.

    Take care of yourself! Wishing you nothing but the best.

  15. Hi Susan,
    I found your story through another blog and have been lurking a bit. I wanted to pop in and say that I’m thinking of you and hoping for all the best!

  16. What alarming statistics! I’m glad you are raising awareness to the number of young adults diagnosed with cancer. I’m surprised that survival rates haven’t increased since 1975!! That’s 36 years of missed opportunities… wow.

  17. Gosh. There is a lot to think about and that is just a couple paragraphs. Health care is sometimes ridiculous… okay, most times. I saw that first hand with my mom’s situation. The neurologist didn’t think getting her hole in her heart patched up was a big deal, but it was actually the biggest deal. And I learned that many times, insurance companies won’t fund patients surgeries to get heart holes patched up unless they have already had a stroke. WTF?

    • My mom and I keep joking because the surgeons always say that a procedure is “easy.” And then we’re just like, “Yeah, easy for the person doing the surgery, not for the person receiving the surgery!” :P

  18. I was 21 years old when diagnosed, I remember being the youngest in the treatment area everytime I was there. I was diagnosed with stage 2a hOdgkins. I’m thinking about you constantly and Id love to reach thru This computer and hug you… I was still covered under my dads insurance bc I was a student.

  19. What kills me the most about all of this is the “kick you while you’re down” aspect of the medical bills. We paid my dad’s medical bills for YEARS after he died, and he even had good insurance.

    Have you watched “Sicko” by Michael Moore? I think it’s on Netflix streaming. I’m certainly not his biggest fan, and question some of his tactics and statistics, but he definitely does a good job of illuminating how scary the greater problem is, in the US in particular.

    • Will add it to my movie list! Netflix streaming on the hospital wireless sucks, so I’ve got a lot of things I’m waiting to watch until I get home.

  20. I started a new job in April and as of yet, do not have insurance. I have diabetes and use insulin every day – my husband has a heart valve replacement that requires maintenance drugs, and recently was diagnosed with colon cancer – so I hear you on the $$. We’ve probably spent $2500 in medicine alone out of pocket – but to pay the Cobra (which is insurance coverage during which you are not officially covered) would have been $2000 a month – or $8000 already.

    Hang in there – hope you get some answers soon so you can focus on recovery! Hugs!

  21. While some of that sounds totally overwhelming, I’m so thankful that in your case the cancer was still in the earlier stages! I think it’s one of those “take it one day at a time” kind of situations with the other stuff. I worry about the whole infertility thing, too, and my mom’s reaction is always, “um, maybe you should worry about finding a boyfriend first, mmk?” Yup, thanks, Mom. Moms are always there to put things in perspective, aren’t they? :)

  22. greensandjeans

    The cost of health care makes my skin crawl. My best friend from home’s little sister had two heart transplants before she was 16 (she is now a very healthy and happy college student), and her family will be crippled with medical bills for the rest of their lives despite countless community fundraisers.

  23. Hi Susan,

    I have been a big fan of food, workout and lifestyle blogs for a while but just found yours recently. I was so overwhelmed when I read your post about being diagnosed with cancer.

    Reading everything you write reminds me so much of my situation last year – in fact we have a lot in common. Like you I’m Canadian. Like you I took journalism and am a radio reporter right now. When I was 19 they found a very rare tumour and I had to have it taken out – I almost had to drop out of school, but in the end I made it through. They thought it was cancer for a while, but it ended up being benign. Unfortunately it was in a very dangerous area and had to be removed. I was so thankful to be in Canadian healthcare system. The amount of MRIS, Cat scans, blood test, one to test my ovaries for cancer (who knows what it was called) – it would have cost a fortune.

    I just wanted you to know that I am rooting for you. I believe you can beat this and I think you have an amazing spirit. I will be reading every day, waiting for you updates. This is just a bump in the road. Your story has touched me more than you know.
    Keep us updated :)

    Best of luck
    – Kristy

  24. lapetitelumiere

    I was diagnosed with a brain tumor at age 23 (everything is fine now, knock on wood), and I can understand so much of what you’re talking about. It’s so overwhelming to be seemingly young and healthy and to have everything crash down around you. Truly, though, it does get easier.

    When I first arrived at the ICU, the nurses were asking me what medications I was taking. I told them the brand of birth control I was on, and they had no idea what I was talking about. All the rest of the people on that floor were too old to need birth control….yikes.

    • lapetitelumiere

      Also meant to add that you are doing a great job of helping yourself understand and get through this. It is a challenging and thought-provoking time, I imagine, but you have a ton of people on your side. Even though I’ve only heard of your blog in the past couple of weeks, I think of you often. Take care.

  25. You are so strong. I just waned you to know that.

  26. Great post, and I agree – so many times young people get over look just on age alone. for example, a month ago i had a Drs. appointment and was told that because I was under 30, they don’t normally request blood work. However, my Dr. is anal (she will admit this upfront) and told me that I was getting one. I appreciated that, as I’ve been to walk in clinics where they basically….dont give two hoots if you got your blood work or not.

    Boy oh boy, another thing…there is a HUGE shortage of doctors in Ottawa – many of the new professionals that come to the city for Govt jobs wait for ages to get in with a real doctor….so, basically, that could be years without real medical attention.

    Anyways, thinking of you from Ottawa!

  27. Wow. So much to think about. All the best to you on this journey.

  28. Amazing and disturbing information Susan. It is crazy too think there has been no improvement for so long in survival rates.

  29. i know a family from my old church whose 7 year old daughter has been battling brain tumors for the past 2 years (read her story at http://www.caringbridge.org/visit/mcraekate, they are a truly incredible family) and i have learned through them just how frightening it is for kids to battle cancer, and how the life saving treatment can cause more problems. there is a charity called cookies for kids cancer that aims to specifically raise funds for pediatric cancer research- something the government is seemingly failing to due. thank you so much for sharing this information with the blog world as it’s something that’s near and dear to my heart- and something that people need to find out about!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 487 other followers

%d bloggers like this: