Meet Alex, the great!

Please feel free to read, share your thoughts, your stories and connect with others!
[Ana & Alex]
Posts: 75
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Meet Alex, the great!

Postby [Ana & Alex] » Wed May 17, 2017 2:42 pm

Dear Colonclubers,

A week after my surgery I just wanted to give an update of my status and talk about my first ever experience as an OP Patient 8)

But first I really want to thank you all again for your support during this period specially in the night before my surgery. I had a very raw conversation with my surgeon at that night and was really uneased and you could help me get my calm back. And that's priceless! She was really upset with me, and that made me feel bad and good at the same time, that I meant for that women at that moment something so strong and that she was trying to fight so hard for me and for what she thought was right for me. But still - my body, my rules.

I went to hospital on Tuesday and was all day long making preparations for the big main event. Blood tests, CT, signing Pappers for the Anasthesia and for the surgery, marking my ostomy.. you name it.

At night I took a picture of my belly and thought about how my husband loved this belly with all his heart, and this was my last night with it on earth - and how about this was a O-K if it would give me a chance of a better life. I made my Moviprep and with all the burning and discomfort I was kinda was glad that I wouldn't be pooping again through my painfully damaged butt anymore.

I was really uneased and excited at the same time, and could only sleep after some crazy mix of Queen, Metallica, Eric Clapton and Beyoncé in those halls. And of course, after the kind words that I receive at the same night from my forum companions :D

Next thing I know I'm waking up, showering and I'm being taken to the OP. I've token Midazolam and I was really calm and I was making jokes for my fellow colleagues to relax (my surgery was in the hospital where I work). I had my favourite Anesthesist and a good friend Anesthesie Nurse taking care of me during the operation, and was lucky to have one of the best Colorectal and oncology Surgeons in Austria operating on me. Everyone was somewhat touched but they gave me their best and so much love and positive energies. I thought it would be awkward but I'm so happy that I could stay "home" and be taken cared for for people who knew me before.

Everyone in my work knows about everything and they are so supportive and kind. I don't have to worry about my Alex making noises or to have an accident because everyone is understanding and it's standing behind me. And still they talk about how excited they are for me coming back and we talk about the future only with positive outcomes in mind. And that is REALLY REALLY AWSOME.

I woke up after 4 hours of surgery and 5 more hours of Anesthesia. They were controlling my temperature and waiting for me to stay comfortable before waking me up. I had a central line on my neck and a NG Tube. An artery line and an oxygen clip in my left and, 3 little plasters on my belly, a colostomy and a drain, I had a urinary catheter and I had some special socks on my legs that inflated and deflated during the night. Covering my belly was an abdominal binder with velcro. But best of all, I had an Epidural Catheter with a Ropivacain Perfusor that aloud me free movement of my legs and no pain at all!

I woke up really happy that everything was gone, with no pain, no urgency. Only my throat hurt like hell but I was prepared with lip balsam and lemon bombons were a life safer! After a couple of hours I could drink and it felt wonderfull.

On the first two days I was at the ICU and I won't lie, it was hard. All those cables and monitoring were so claustrophobic! But thankfully I slept mostly during those two days.

At the first day I removed my NG Tube. I drank and had tea and two soups.

I was able to get up at the second day. I had a breakfeast with bread, butter and coffee and i was so happy for it! We removed the artery line that day. That's when I was transfered to a bedstation.

Since then I set goals for the present day and I tried to keep up.
Day three I walked three times around for 10 minutes. Loose the urinary catheter.
Day four walked 7 times and paused the epidural which didn't go so well. Day five walked 7 times as well and remove the drain. Day six removed central line and epidural catheter, went to the Garten and went down some stairs. Day seven SHOWERED and walked 3 times for an hour.

And today is day 8 and I haaaaad ice cream and washed my hair! I'm hoping that I can go home tomorrow.

I haven't been able to see my daughter because she is sick since Sunday :( I miss her so much...

My pathology report came today and I was a little sad because I thought I had a t3n1 - but after all it is a T2n2. The n2 part scares me of course. I had 4 out of 15 lymph nodes. But hey. IIIB it is.

Also the response to chemo radiation wasn't fantastic and that gets me down. I know the prognosis is better when people have a better response to treatment. Oh well. What can i say... I'm extra motivated to do chemo right now and I'm hoping that it does the trick :(

And finally, my Alex!
I'm in a mist of love and discuss, relief and sadness for having to find peace with my companion at such a young age - but mostly, and since my response was not so good I'm really happy that I made the decision to go foward with it.
I have an oval 4 cm colostomy with baby stool. I say baby stool because it is normal stool only smaller. Everytime after I eat Alex wakes up and states its own mind.
I then change the pouch and I'm good to go 8)

Ich chose a one piece system from Salts and I change it three times a day. Spray remover, wet Toilet paper, clean toilet paper, skin barrier and neu pouch and it's game on. It's incredible how well the pouch stays on the skin. My self awareness is at a peak right now. But...
I will get used to it. I know :)

There is nothing I won't do in this world to stay with my daughter as long as I can and to beat this shit! I'm preparing mentally for the chemo and already told my oncologist to throw a bomb in my direction.

Planing a Porthacath for next week.
And then...

Next phase: 8 rounds of Capox.
Bring it on!

Thank you so much for the love,
Ana
Last edited by [Ana & Alex] on Wed May 17, 2017 10:44 pm, edited 1 time in total.
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

User avatar
CRguy
Posts: 9167
Joined: Sun Feb 10, 2008 6:00 pm

Re: Meet Alex, the great!

Postby CRguy » Wed May 17, 2017 3:19 pm

To quote Queen :
" 'Cause YOU are the champion of the world. !!! "

Heal gently ...
then go out and kick some colorectal ass

Mega Cheers my friend
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Soccermom2boys
Posts: 141
Joined: Tue Nov 10, 2015 10:29 pm

Re: Meet Alex, the great!

Postby Soccermom2boys » Wed May 17, 2017 4:49 pm

Thank you so much for the update, have been thinking of you, but wanted to give you the time and space to heal.

It does my heart good to hear that you are adjusting well to your new appendage of sorts. LOL It would be hard not to be self-conscious about it especially so early in, but I honestly don't think anyone would notice mine, even the ones who know, just because of the camouflage of clothing. (Hey, not a bad idea to use this opportunity to go on a shopping spree--I am a shopper and I took full advantage of the situation to buy lots of new tops to make sure it wasn't noticeable. :mrgreen: )

Don't be too disheartened by the fact that your radiation wasn't as successful as others--I was pretty much in the same boat in that regard. I remember the radiologist checking towards the end of my sessions and he said "at least it didn't grow" which was trying to put a positive spin on it really didn't shrink much either. LOL If I have learned anything with this whole trip it's that there really is no guarantee of anything being an indicator of success or failure, it is all individually unique how our bodies respond, etc.

Fingers crossed you get released shortly and can get lots of hugs and kisses from your little girl! Do come back next week or whenever you get the port in and start chemo--we'll get you through! Trust me, you'll want the camaraderie for those less than cheery days and we will be able to relate in a way your family and friends cannot.

Well, you are 2/3 of the way checked off--just have chemo left in your CRC triathlon. Hang in there!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox
With these odds, how have I not won the lottery already?!

User avatar
Maia
Posts: 2414
Joined: Fri Aug 24, 2012 8:00 am

Re: Meet Alex, the great!

Postby Maia » Wed May 17, 2017 8:00 pm

Ana, best to you. Attitude is not everything, because otherwise so many more would be doing well but.. attitude makes a difference. And you have such a graceful stance on this that, from that corner, only good things will come : )
Wishing you a continuous good recovery and a good start with treatment. Have you been tested for microsatellite status --MSS or MSI-high--? Sorry if you already replied to this in other post.

[Ana & Alex]
Posts: 75
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Meet Alex, the great!

Postby [Ana & Alex] » Wed May 17, 2017 10:52 pm

Thank you so much you guys.
I'm thinking that still have hard days ahead before I can reach a successful closure, which I can only hope for. And good or bad, I definately will be wanting to share them with you...

My colostomy is still noticeable, my abdomen is really distended, and when the pouch fills you can tell that something is under there. I think I have to think about my clothing and ir is known that a shopping spree hasn't let any women in this world down :mrgreen:

I'm still waiting on the results of MSI and until then I have to research about what it really means.

Moving on on the triathlon and hoping to stay a Champion...

Love,
Ana
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

DarknessEmbraced
Posts: 2721
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Meet Alex, the great!

Postby DarknessEmbraced » Thu May 18, 2017 2:06 pm

I'm glad everything is going well and hope you can go home soon!*hugs* I hope your chemo goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17

Lee
Posts: 5081
Joined: Sun Apr 16, 2006 4:09 pm

Re: Meet Alex, the great!

Postby Lee » Thu May 18, 2017 4:12 pm

Freddy87 wrote:Dear Colonclubers,

My pathology report came today and I was a little sad because I thought I had a t3n1 - but after all it is a T2n2. The n2 part scares me of course. I had 4 out of 15 lymph nodes. But hey. IIIB it is.

Also the response to chemo radiation wasn't fantastic and that gets me down. I know the prognosis is better when people have a better response to treatment. Oh well. What can i say... I'm extra motivated to do chemo right now and I'm hoping that it does the trick :(


Thank you so much for the love,
Ana


For what it's worth, I had 6/13 nodes positive and I am very much alive today.

You've got the right attitude regarding Alex. You are already ahead of the learning curve for many people just starting this journey. I too am open about talking about my colostomy, figure if nothing else, I can educate people about colon cancer.

I was about 2-3 weeks out from my surgery, DD had a friend sleeping over. We were in the kitchen talking when I let off the loudest fart through my bag. DD was mortified and by the expression on her face, want to crawl into a hole (she was 11 at the time). Her friend was a bit shocked, like what was that. I reminded her friend I had surgery, and that I was suppose to pass gas for awhile. I even went so far as to say, my surgeon would have been proud of that loud noise. DD's friend was like that's okay. I remember when my dad had surgery, he too was suppose to pass lots of gas. No biggie. DD was very relieved. How we approach/deal with it, is everything. And you've got the right attitude.

Take care of yourself. Hope you're out of Da Big House by now,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Lee
Posts: 5081
Joined: Sun Apr 16, 2006 4:09 pm

Re: Meet Alex, the great!

Postby Lee » Thu May 18, 2017 6:12 pm

Freddy87 wrote:My colostomy is still noticeable, my abdomen is really distended, and when the pouch fills you can tell that something is under there. I think I have to think about my clothing and ir is known that a shopping spree hasn't let any women in this world down :mrgreen:
Ana


I was told to buy clothes that are "busy" in the colostomy area, especially with swimsuits. I wear a special hernia support belt, made by Nu Hope. There is a special ring on this belt that allows my bag to go thru and then hang down. Guess that makes the height of my wafer even with my hernia belt. Thus it does not stick out. There is also a support grp for people who have ostomies . You might want to check them out. During the healing period, wear loose clothes.

http://www.uoaa.org/

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

[Ana & Alex]
Posts: 75
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Meet Alex, the great!

Postby [Ana & Alex] » Wed May 24, 2017 6:30 am

Thank you very much Lee. I'm lurking around the uoaa for a couple of weeks now and they have a lot of useful links and information.

I'm not thinking about swimming this year because of the oxi, but I will sure as hell get a sexy bikini to play with my daughter in the garden.

And as soon as I heal up a little more I am planning to go wild on a bunch of dresses 8)

Thanks for the love,
Ana
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

MissMolly
Posts: 381
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Meet Alex, the great!

Postby MissMolly » Wed May 24, 2017 8:02 am

Ana:
It can take 2-3 months for the abdominal distinction to fully resolve after laparoscopic surgery. The carbon dioxide gas can diffuse into the soft tissues where the body then needs to metabolize the gas to lessen its presence.

Time and patience. Certainly, being active and moving - walking and gentle exercise - is immensely helpful. I am a fan of simple/basic yoga postures post surgery. Yoga postures help with minimizing adhesions and act as a sort of internal massage to the intestines.

Your colostomy output, too, may be more frequent and of a more liquid/mushy consistency in the early months post surgery. You may have more urgency and filling of the pouch. Do not dispair. After 2-3 months, the intestines will typically find their equilibrium point and a more typical colostomy output of 1-2 times a day will be found.

I am glad that you have found the UOAA forum. It is a nice group of people, ready to lend a helping hand to adjusting to an ostomy. I participate in the forum, as "Button."

I have had my ileostomy now for close to 6 years. It is well behaved and gives me absolutely no grief. In the course of a day, I do not give it much thought. I wear the same clothes as prior to my ostomy.

A belly band from ComFizz may give you the abdominal contouring that will help you feel confident in wearing a wide range of clothing. The belly band is a 6" wide band is Soandex/Lycra that smooths the ostomy pouch and folds it firm against the abdomen.

ComFizz is worth exploring. It ostomy undergarments are awesome. http://www.comfizz.com

I am a loyal ComFizz customer. I wish that I lived in the U.K. so that I could visit their retail store.

Best to you in your healing and getting back to the life that you love,
- Karen -
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Baidu [Spider], BIG ROB 69, Bing [Bot], Google [Bot], mhf1986, susie0915, teacher2017, Yahoo [Bot] and 54 guests