Contribute to new cancer book

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Passing along this email I received today from Becky McGuiness F=Check out the link below. Looks like a great project….Take care, Dennis

I got bone cancer at 21 in 2008 and now in part
remission.
I have an idea to create a brochure/book
with poems for all cancer patients regardless of cancer
and if male/female and young and old, it also have ideas,
advice and links to cancer blogs.
When I was going through cancer I found it hard to find
other cancer patients journeys to read, and just socially
communicating or reading a brochure that wasn’t
necessarily
medical information.
I’d love to add your Being Cancer Network website link on book I’m making so people can join in with your community ;-).
@FixersUK on twitter are supporting me and funding to make cancer
brochures.
Link:
http://copingwiththebigc.blogspot.co.uk/2013/04/leaflets-with-poems-for-cancer-patients.html?showComment=1367780961978

It should hopefully be made around sept/oct 2013 this year.

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Gonna Fly Now – guest cancer blog

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Here is the first in our new Spring class of cancer bloggers.  Mysti was diagnosed with stage IV ovarian cancer just last October.  She lives in Texas with her two sons and husband.  She has a spunky writing style.  He writes at Living in Hicksville, Tx

 

Gonna Fly Now

 

The first time I walked into the cancer center where I get treatment, I noticed the staircase.  It seems to loom over the entire first floor of the center.  I remember looking at that staircase, as imposing as the one in Gone With The Wind (only without the rad red carpeting) and thinking to myself “I’ll never be able to take the stairs again.”  Those stairs seemed as daunting as the stairs Rocky ran up during his training in the first Rocky.  No way I could do that.  I was so grateful for the elevator.

You see, I was so weak.  This was after 2 weeks of ascites building in my abdomen to the point I could barely breathe, and hardly eat.  After surgery a month before that opened me up wide and removed multiple organs – and as much cancer as they could see.  After weeks of nausea and vomiting and not being able to keep anything down.  After blood clots in the lungs and having to have TPN because I just couldn’t eat much.  After losing 30 lbs – 7 liters of it ascites that was drained during my surgery – and much of that muscle strength.  The day after my first chemo.  I had to have my husband drop me off at the door to the center because I simply didn’t have the strength to make the walk.

It was a scary time.

Since then, I’ve lost the nausea (as well as my hair), regained my appetite and my ability to eat regular meals, ditched the TPN and built my endurance back up.  But I was still taking the elevator when I went to the cancer center.  Those stairs still scared me.  The thought of only being able to get halfway up worried me – would I then have to go back down?  Or get help to go back down?  Or worse, have someone come get me to carry me the rest of the way up?  Those stairs are completely open to the main floor – as well as the 2nd floor – everyone would be able to see my humiliation if I failed.  So I just didn’t try.

Not trying isn’t usually my MO.  Yet the changes my body had been through affected me emotionally as well as physically.  And to be honest – I wasn’t that brave a person to begin with.  Public humiliation has never been something I was willing to risk.

I tend to be a little more willing to step out there now.  It’s like I figure what do I have to lose?  I’ve already lost my ability to have children (as well as the ability to regulate my body temperature – good lord a’mighty I’m tired of these hot flashes!), my appearance, hell – my modesty/dignity while in the hospital.  Does it really matter if I made a spectacle of myself?  Does it really matter if people can see my newly grown in silver hair?

Can I let them see me try and possibly fail?

Sure I can.  Last week, when I went to get my weekly blood draw, I took the stairs to the second floor.  I told myself I would take it slow and one step at a time.  I grinned all the way up.  I made it to the top, all by myself.  I might have heard “Gonna Fly Now” in my head while I did it.  I did manage to restrain myself from dancing around with my fists above my head when I got to the top.  Just barely.

Last night, my youngest brought a couple of friends over to the house.  I tend to be bare-headed in the house, unless we have company.  Last night, for the first time I didn’t rush to the bedroom to grab a cap or scarf when I heard voices on the porch.  I just stayed in my chair as we watched the hockey game, and let the boys see my bare head.  And you know what?  None of those boys seemed to care that I was practically bald.  I may not quite be ready yet to go without my scarf at work, but I’m getting there.

One step at a time.

~from Living in Hicksville, Tx

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Spring Update

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I am going to be adding a number of cancer blogs in the next few days.  I’ll be posting samplings of some of them also.  It’s been a long time between posts.  Once again I feel that I have let people down out there.  Things conspire – the arrival of Spring and weeds in the garden, putting in more fruit trees, putting down 170 bags of mulch; my mother still lives with us, fading mentally a little more each day;  new impending health issues of my own which I’ll write about later; and then a major project at work (I still only work part-time), creating a comprehensive, coordinated patient and family cancer education program for our two dozen clinics and units throughout the state – this in my spare time and the project involves creating a new website.  This could be my final and best work as a nurse.

But it’s looking like rain today. This website needs work again.  The WordPress platform needs updated again.  They tell me it is vulnerable.  But I always worry about losing date whenever I upgrade.  For some reason I get a dozen new registrations per day, almost 1000 in the past few months.  By their addresses I think most of them are from human bots and trollers – they get thru the captcha hurdle  They don’t seem to be able to make comments but then legitimate readers don’t seem to be able to either.  Contact me offsite with details of any issues you encounter.

I’ll be posting some samples of cancer writing later today, staggering their publication over the next two weeks – survivors of breast cancer, ovarian, skin cancer, lymphoma, mesothelioma, and others.  I happened to catch the last episode of “The Big ‘C'” – I may write about that also.  Thank you all for your continued support and readership.  Visits topped 300k last week.

Take care, Dennis

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To Wig Or Not To Wig – a cancer question – Guest Post

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Another new breast cancer blog, this one from Sonia Convery who is now cancer-free two years afetr diagnosis.  She writes at courage grace and humor | surviving and thriving after cancer

WIG OR NO WIG –THAT WAS THE QUESTION (subtitle: Wiggin’ out over losing my hair)

At my first chemo in June 2011, my chemo nurse, Cathy, told me I should expect to start losing my hair approximately 14-17 days after that first treatment. Sure enough, around that time, I started noticing bunches of my hair coming out when I showered. I had already made the decision that, when the time came, I would shave my head. Now, 2 weeks after my first course of Taxotere, Carboplatin, and Herceptin, that time had come. My Oncologist had given me the name of a beauty store that sold wigs and would shave my head at no charge. Other patients told me that I should visit the beauty store before I lost my hair and pick out a wig that would match my current hair color. So, before the big day, I went to the store with my partner and my Mom and my youngest daughter (she was about 2 ½ years old at the time and totally oblivious to what was really going on). The ladies there were very sweet and they helped me pick out a wig that looked flattering and gave me support and encouragement. At this point, everything was still pretty surreal to me and I couldn’t imagine what it would be like to be without my long, wavy hair that I had had for so long. I had to tell my oldest daughter, Jada, that I would be shaving my head to prepare her for the drastic change in my appearance that was coming. She had a hard time with it and I had to tell her that, in order for me to get better and the medicine to work, this is what I had to do. I assured her that it would grow back and told her she and I could have fun picking out different scarves and hats for me to wear. I asked her if she wanted to be there with me when I shaved my head and she answered with an honest “no.” I was more worried about how she was going to take it when I was bald than how I would deal with it.
The morning before I shaved my head, I took pictures with the girls. I told Jada that today was the day and she gave me a big hug. Kayla, of course, had no clue what was going on, thank goodness.
Zetti and I went back to the beauty store and off came my hair. It didn’t take very long and Zetti took a few pictures during the process. At one point, the hairdresser had shaved the sides of my head and left me with an awesome mohawk. It was funny yet sad at the same time. I still couldn’t believe I had cancer, let alone that I would now be bald for who knew how long.
As I was leaving, the ladies at the shop wished me good luck and told me to be sure to wear a nightcap, because my head would get very cold at night. I put on a hat that I had brought with me and left with the wig I had purchased, along with a cute new nightcap, in a bag. I felt, well, I wasn’t quite sure what I felt. Zetti suggested we go get some lunch and we drove to Wilton Manors to find a place to eat. I still hadn’t put on the wig. We parked and she took a picture of me with my shades on and my sparkling new bald head. I had to admit, when I saw it, I looked pretty good. Demi Moore in G.I. Jane popped into my head. Maybe this wouldn’t be so bad after all. We got out of the car and I put the wig on. It felt weird. Zetti took a couple of pictures and I looked ok. It was a hot day, so I decided not wear the wig and just wear my hat to the restaurant. We sat outside at Rosie’s Bar & Grill and ordered lunch. After a while, it was just too hot outside and I made the bold move of taking off my hat. I thought everyone would be staring at me and felt very self-conscious at first. Zetti told me I looked really good and took another picture of me – I did look good. We had a really nice lunch and went home.
When Jada came home from school that day, I had my hat on. I asked her if she was ready to see my new look and she asked me to wait a minute. When she was ready, I took off my hat. She started to cry. I hugged her and told her that I was fine and that everything was going to be alright. My supervisor, Pamela, dropped by at that moment and immediately started taking pictures of my bald head on her i-phone. It helped having her there to distract Jada and make the moment a little less serious.
I eventually became really comfortable being bald. It was liberating – not having to worry about having a bad hair day or spending all that time in the morning getting ready. I found I was more comfortable wearing hats and actually never wore the wig I bought. I donated it to my Oncologist’s office for them to pass on to someone else who needed it.
My hair is growing back now and, believe it or not, there are days I miss being bald. I learned not to be so self-conscious about how I look and not care so much about how others perceive me. It was a really great learning experience. Bald really is beautiful, and so are all of my sisters that I have the honor of sharing this difficult journey with – wig or no wig.

~from: courage grace and humor | surviving and thriving after cancer

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Colonless – young cancer survivor – guest post

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We last heard from Reagan Barnett a couple of years ago.  She has a new blog now that focuses on colon cancer, genetic cancer syndromes, and young adult cancer issues. In the world of cancer blogging, colon survivors probably don’t get their due.  Cancer blogs mirror incidence of a particular cancer but not always.  Aggressive cancers are underrepresented sometimes.  Genetic cancer syndromes such as Lynch’s are probably more so.  Reagan is a sparkling voice for young adult survivors.  Her new blog is called When My Genes Don’t Fit | Living With a Genetic Cancer Syndrome

Colonless

I remember standing in front of the hotel mirror at 5:00am on the morning of August 6, 2008. I held my shirt up and traced my fingers over my belly button for the last time. It was the last time my abdomen would ever look like that. The last time I would ever see the belly button I was born with. I would never again wear a bikini or change in a locker room with out being acutely aware that I am different. And on that morning it hardly mattered, though I knew later it would. Because the other thing on my mind was that on the other side of my skin, behind that belly button, was a tumor the size of an apple core. And that tumor had been robbing me of the chance at a healthy life. It had secretly run my life for the past 5 years, but now I knew it was there. And that morning was the morning that it was going to be removed. I had a 7:00am surgery scheduled with my doctor at Johns Hopkins, and I was both terrified and eager. Continue reading
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