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Hello, newbie here

Kaleidoscope49
Posts: 9
Joined: Aug 2020

Hi all, I'm new around here and, honestly, scared as hell. I'm 49 and just met my oncologist yesterday. I've been dx with stage 4 rectal cancer. 
I am scheduled to get my port placement this Monday and start chemo on Wednesday. Trying darn hard to keep a positive attitude but I am finding it really hard to not just be scared. 
My daughter is getting married October of next year and my son just bought an engagement ring yesterday to pop the question to his favorite girl. I an struggling to not wonder if I will be here to share in these beautiful moments of their lives. 
How do you all do it???

SnapDragon2's picture
SnapDragon2
Posts: 321
Joined: Nov 2019

I felt the more I knew the less scared I was.  There is power in knowledge!  The more informed you are the more in control you are with knowing  how to help yourself through this horrible time.

 

Kaleidoscope49
Posts: 9
Joined: Aug 2020

Thank you. I just got round 3 of chemo yesterday and have found the same, that knowledge is power. That's always been the case in other areas of my life, but it took me a bit to figure out it would be the case with this too. 

Trubrit's picture
Trubrit
Posts: 5222
Joined: Jan 2013

The feelings of horror, right after diagnosis, is so normal. Your life has been turned upside down.  Allow those feelings, roll with them - for a while, get your port in and that first chemo over and done with, then you can say 'Well, I'm on the road to recovery'. 

Everyone deals with their diagnosis differently, finding something that works for them. It is good to read how others handled it, and then you can sift through the differing experienes and see if one works for you. 

When I was first diagnoised, I went through the whole 'Oh no, I'm giong to die' part, and all that goes with it. Then once I started on treatment, I was actually doing something to kill the Cancer and make it go away, I looked at the stats - they weren't pretty. I saw that I had something like a 97% chance of dying in five years. That was like a kick in the stomach. Then I thought, what about that 3%? Someone has to be part of that 3%, and I don't see any reason why it can't be me. And that is how I looked at the whole situation.

Having a positive attitude will take you a VERY long way.  

I'm not saying it has been an easy road, far from it. And at one point, I thought my head was literally going to explode. That is when I discovered guided meditation. I found a CD - do they even sell them any more? and I would listen to this lady, every night when I went to bed. I found that, even though I am a very hyper person, I could actually follow her instruction and visualize what she was telling me to visualize. It was nothing short of a miracle for me.  From there I moved on to meditation and yoga. That and my almost daily forrays into the wilderness, have gone a long way to saving my life.

As a Stage IV patient, I am now Six Years, four and a half months NED - No Evidence of Disease.  I have surpassed their five year survival, and I intend to live into my 90's. 

So, thats my story. Others will come along with ways they have handled their own personal journey. 

I wish you all the best.  Stick with us here, and we will stick with you. 

Tru

Kaleidoscope49
Posts: 9
Joined: Aug 2020

Great advice! It's refreshing to know that you found what works for you and that you are beating the odds. I'm so happy for you and hope that I will also be part of that 3%. Thank you for responding!

danker
Posts: 1256
Joined: Apr 2012

Your young age is definately in your favor'!  I was 77 when I was dxed---- currently 88. Been NED(no evedence of disease) for 11years.  You can also so it, and live as long as I have.  Best of luck to you!!!

 

Kaleidoscope49
Posts: 9
Joined: Aug 2020

Wow that's incredible! My doctor keeps saying "you're young and that's good for us". I can remember when I thought 49 was old, but the older I get, the definition of "old" certainly changes 😂 Thank you for responding and sharing your story, it's so helpful to hear from those that are winning!

SandiaBuddy's picture
SandiaBuddy
Posts: 1103
Joined: Apr 2017

All of life is composed of moments, and a cancer diagnosis can make the moments seem more precious. Even with a dire diagnosis, you will likely be able to celebrate your childrens' weddings.  From my perspective, it is useful to talk with your doctors about your diagnosis and survival chances.  I always like to hope for the best and prepare for the worst.  And, although I am hesitant to contradict Tru on any matter, sometimes attitude is not everything.  Sometimes it helps to look at the worst case scenario, cry on the floor a while, or down a bottle of wine.  I have had a pretty crappy attitude, but I have survived so far.  We are all different.  Sorry you are here and please let us know how we can help.

Trubrit's picture
Trubrit
Posts: 5222
Joined: Jan 2013

You can contradict me any time you want. I certainly do not know it all, thank goodness - that would make for a rather boring future. 

I did say 'a positive attitude can take you a very long way' as I know it is not 'everthing'.  

There, I've redeemed myself - right?

It is a fight we all face in our own way, hopefully made a little easier, especially with online friendships like we enjoy here on the forum. 

Tru

 

SandiaBuddy's picture
SandiaBuddy
Posts: 1103
Joined: Apr 2017

Tru:  I hoped you would take it lightly.  I figure we can play "good cop, bad cop."  You can recommend meditation and I can recommend drinking till you pass out on the floor and then getting up and fighting back the next day. . . Wink

Trubrit's picture
Trubrit
Posts: 5222
Joined: Jan 2013

Me, drinking a bit too much, then trying to stay upright on my Zafu and failing misreably. HA! 

I raise my glass to you, my friend .

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 1103
Joined: Apr 2017

Zafu, I had to look it up.  Meditation pillow.  I never have tried meditating while I am drunk (that is a meditation in itself), but you are giving me inspiration!Wink

beaumontdave's picture
beaumontdave
Posts: 1069
Joined: Aug 2013

LOL, funny stuff Sandia!..................................Dave

Kaleidoscope49
Posts: 9
Joined: Aug 2020

I am one who likes to live in reality and be in control. I think that may be why I've struggled so much with this is because I'm not in control of it all. But I have found, as yourself and others commented as well, that knowledge works for me because it gives me some sense of control. My doctor and I have had conversations about my need for the reality of it all and he's done well at giving me the answers that I need but also being honest with me when we don't have the answers yet and letting me know when we will (like how the tumor is responding, etc). I'm trying hard to have a positive attitude, but you are right as well that sometimes you just have to allow yourself to be a crybaby. So I've done that too and it helps to get it out. Then I put on my big girl panties and start to fight back again. Thank you for sharing with me. 

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

Welcome and I'm sorry you have to be here.  Don't be afraid of feeling scared.  You are on a path right now that you never wanted to be at - we all were.  It is scary and it's okay to wonder about the future and what it holds.  No one wants this disease or ever plans for it as it is just thrown at you, and all of a sudden you have all kinds of thoughts in your head.  You will be going through a roller coaster of emotions.  Doctor's appointments, tests, and more tests.  It's going to be so much for you to take in at once.  Make sure you take someone with you to appointments as it's better to have another set of ears.  Make a notebook of questions you have.  And come here with questions, as we have a wealth of knowledge here on the board.  We won't give you medical advice, but we have a lot of experience.  Being diagnosed at 50 myself, it was a blow, but finding this site gave me so much encouragement and hope.  Please come here often.  Good luck on your port.  Wishing you the best.

Kim

Kaleidoscope49
Posts: 9
Joined: Aug 2020

Thank you Kim. For sure it's been a kick in the gut, but everyone on here knows that road for sure. I've always been the one to handle everything in our family, hold everyone together, etc. It's hard to step back from that role to pay attention to what my body needs me to do to fight this thing. I did get a notebook as you suggested and that has been very helpful to keep track of information as well as side effects so I don't forget to mention them to my oncologist. I found out quickly that not doing that was causing me to forget information that either he told me or I needed to tell him. Thank you for suggesting that and for responding. 

Tom M.
Posts: 158
Joined: May 2019

You'll learn as you go. From your doctor, infusion nurses, and from the people here who have been where you are right now. There will be ups and downs. No matter what, stay positive. We all do it with the help of our families and each other. No 2 people are alike when it comes to this. Good luck with all of it. I look foward to seeing your post years from now.

Kaleidoscope49
Posts: 9
Joined: Aug 2020

Thanks Tom - I'm hoping for that as well. And hoping that, as I follow the same journey as others, I can be helpful as you all are to me. 

Allidoisyoga's picture
Allidoisyoga
Posts: 31
Joined: Apr 2020

I am so sorry you are here.  I have no words of advice.... and living in this unknown world of cancer is really scary. I feel like writing here... and connecting with others and sharing my story has really helped.  Sending love and strength.  Hope to hear from you soon.

Kaleidoscope49
Posts: 9
Joined: Aug 2020

Scary as heck, but it has been helpful. I freaked out a little in the beginning when I got on this site and read some of the posts because my lack of knowledge scared me. But it has also helped me to ask the right questions and get a better understanding of my specific battle to wage against this. That's why it's taken me a while to respond to everyone that was so nice to reply to my original post. I feel bad about that but then realize that you all likely understand what I'm saying. 
So - thanks to you for responding to me and helping me know that I'm not alone here. 

danker
Posts: 1256
Joined: Apr 2012

Having cancer is sort of like hiking!  When you are still a long way from home(or the car) you realy have no choice but to keep putting one foot ahead and keep on going-even if you are tired!

It is surprising what can result. You may end up NED  even if it was a bumpy path!  

So just take it a day at a time and appreciate any good time!!  

Best of luck to you.

SophDan2's picture
SophDan2
Posts: 149
Joined: Jul 2017

When we hear that we have cancer, it's a first for all of us. I was so inexperienced with cancer, I wasn't scared, I just looked at it like a broken arm. My attitude was okay what do I need to do to fix it. My sister who had experiences with cancer almost got angry with me (she was with me the day I found out); she said "didn't you hear what the doctor just told you?". My point being, if you have always been a person that looks at life as the glass being half empty, that thought process doesn't change. However, if you have always looked at life as the glass being half full, that won't change either. What kind of person are you?

This forum was sooooo valuable to me when I was first diagnosed and during my treatments, and as you can see there are many of us that are still here and living our lives as best we can.

Sending positive energy your way!

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