The Miseries - But 'Hey I have it pretty good...'

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SteveNZ
Posts: 103
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

The Miseries - But 'Hey I have it pretty good...'

Postby SteveNZ » Tue May 29, 2018 8:30 pm

I am almost embarrassed to even raise this but YUK ........ this is the pits.

I have just finished my first set of radiation treatment. The Chemo had to be stopped so my body has had it pretty good.
Except for the, pretty agonising and continual need to use the toilet with a fried anus-rectum.
I now have to sit it out, for at least six weeks before they can operate. To let the radiation do it's thing and then start to heal.

What has hit is the real bad miseries!????? Totally illogical BUT WOW pretty rough.
I flew back home (from the radiation clinic, all pretty great) and have now unpacked and then really got hit with this?
Is it normal for folk? I really have not had it too bad at all?
You just want to cry and cry .... oh come on Steve real men don't cry (well those soldiers in war do, but they saw their mates die) and to be honest unnerving....
Oh brother...... :( :( :(
Last edited by SteveNZ on Thu May 31, 2018 5:27 pm, edited 1 time in total.
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

heiders33
Posts: 222
Joined: Sat Nov 04, 2017 11:08 am

Re: The Miseries - But 'Hey I have it pretty good...'

Postby heiders33 » Tue May 29, 2018 8:37 pm

Yes, it’s absolutely normal. For me, sometimes it’s when I hit a milestone, such as my one year anniversary from diagnosis. I got hit with it when I was in the hospital recovering from surgery. It’s like your body is doing all it can to endure a trauma, and when you reach a certain point your body relaxes and the tears flow.

Sorry about the radiation pains - I had that pretty bad as well with regards to painful bowel movements. It does go away eventually.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI scheduled

Soccermom2boys
Posts: 174
Joined: Tue Nov 10, 2015 10:29 pm

Re: The Miseries - But 'Hey I have it pretty good...'

Postby Soccermom2boys » Tue May 29, 2018 10:14 pm

SteveNZ wrote:What has hit is the real bad miseries!????? Totally illogical BUT WOW pretty rough.


There is nothing illogical about it—your brain and emotions have just caught up to you now that you are back home and taking a respite from active treatment. It is easy to see how people can suffer from PTSD after dealing with cancer—so many triggers. You will get back on track, but it’s also ok and natural to grieve your previously cancer-free life. You are also no longer surrounded by your fellow comrades in cancer and it can feel isolating to have these physical and mental challenges thrust on you and no one around you to have a personal understanding of how it feels.

As Heiders mentioned, give it a few weeks and you will be surprised how your body recovers from the radiation. And definitely prepare for the surgery, both mentally and physically. I honestly think I was in my best physical shape leading up to my surgery, I wanted to give my body the best possible chance at recovering as I was heading in to a life-altering open abdominal surgery since I knew I was coming out with a permanent colostomy. I believe there is research out there that strongly suggests you wait a minimum of 7-8 weeks for your surgery after the radiation to give it a good chance of a complete clinical response.

Enjoy being back home and recovering in the comforts of your own home. Hop on here when the blues build up and you need a place to fit in—we know what you’re going through. :D
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

SteveNZ
Posts: 103
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: The Miseries - But 'Hey I have it pretty good...'

Postby SteveNZ » Tue May 29, 2018 11:18 pm

Soccermom2boys wrote:
SteveNZ wrote:What has hit is the real bad miseries!????? Totally illogical BUT WOW pretty rough.


... I believe there is research out there that strongly suggests you wait a minimum of 7-8 weeks for your surgery after the radiation to give it a good chance of a complete clinical response.

......Hop on here when the blues build up and you need a place to fit in—we know what you’re going through. :D

Thank you I appreciate that.
I never thought about the 'mourning' of what it was like before. Quite true, you just continually do that in your thoughts.
My surgeon actually said something like '...I won't even see you until at least four weeks...' and am expecting the surgery at some later time.
What a wait though!!

As with yourself I will need (very, very small chance I may not) the permanent colostomy due to the tumour location. And my surgeon also described how he believed that in a case such as mine the best long term solution is to pretty well 'remove it all' (as so much would need to be cut away) to guarantee all cancer is removed rather than take a small gamble. Which was still quite in order! I trust the team I am under. As he wisely shared 'do not even worry about it now, take each event, radiation, chemotherapy etc one step at a time'.

YUK. Knowing what was ahead had totally different emotions that when actually within the 'battle zone' where reality sinks in.....
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

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juliej
Posts: 2825
Joined: Thu Aug 05, 2010 12:59 pm

Re: The Miseries - But 'Hey I have it pretty good...'

Postby juliej » Wed May 30, 2018 4:27 pm

SteveNZ wrote:You just want to cry and cry .... oh come on Steve real men don't cry (well those soldiers in war do, but they saw their mates die) and to be honest unnerving....
Oh brother...... :( :( :(

Soldiers and cancer patients have something in common - they both experience PTSD. Yep, a recent study showed that one-fifth of patients with cancer experience post-traumatic stress disorder after their diagnosis. So you aren't a crybaby, it's completely normal. It's just too much for the mind to take in and so depression and anxiety rear their ugly heads. Like we need something more to happen to us!

What helped me the most was getting out in nature. Something about being outside calmed all my "miseries." Getting a cancer diagnosis puts you in a weird situation: I have never felt more alone, but at other times I have never felt more connected to nature and life.

Any time you feel like ranting, crying, venting, etc. we're here for you! Remember that.

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 5/11/2018, CEA<1

SteveNZ
Posts: 103
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: The Miseries - But 'Hey I have it pretty good...'

Postby SteveNZ » Wed May 30, 2018 6:41 pm

juliej wrote:
SteveNZ wrote:....Any time you feel like ranting, crying, venting, etc. we're here for you! Remember that.

Juliej

I so appreciate folk being here for me.
Just knowing I am not alone gives great comfort.
And as from my 'autograph' I pray a lot. Currently with questions galore..!?
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

Soccermom2boys
Posts: 174
Joined: Tue Nov 10, 2015 10:29 pm

Re: The Miseries - But 'Hey I have it pretty good...'

Postby Soccermom2boys » Wed May 30, 2018 9:48 pm

SteveNZ wrote:
And as from my 'autograph' I pray a lot. Currently with questions galore..!?


Just a thought, but when I was first diagnosed in August of 2015 I stumbled across a book by Michele Cushatt—she was writing about her recent experience with cancer (tongue) in her memoir “Undone”. Michele is very steadfast in her faith and I think you will greatly enjoy and find comfort in reading through her book as well as her blog. Check it out at, MicheleCushatt.com, I think you will find a kindred spirit. :D
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

Caat55
Posts: 391
Joined: Sat Dec 23, 2017 6:01 pm

Re: The Miseries - But 'Hey I have it pretty good...'

Postby Caat55 » Wed May 30, 2018 10:26 pm

It is a shock when you have time to pause, in between treatments, post surgery, etc. realize, "I Have Cancer". In the midst of things you just try to survive and then you have time to reflect and bam, it hits hard.
Acknowledge those feelings, don't beat yourself up. I feel sad for strange reasons and at unexpected times. It's real.

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

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O Stoma Mia
Posts: 1322
Joined: Sat Jun 22, 2013 6:29 am
Location: Manila, Leyte Gulf

Re: The Miseries - But 'Hey I have it pretty good...'

Postby O Stoma Mia » Thu May 31, 2018 12:17 am

Soccermom2boys wrote:
SteveNZ wrote:
And as from my 'autograph' I pray a lot. Currently with questions galore..!?


Just a thought, but when I was first diagnosed in August of 2015 I stumbled across a book by Michele Cushatt—she was writing about her recent experience with cancer (tongue) in her memoir “Undone”. Michele is very steadfast in her faith and I think you will greatly enjoy and find comfort in reading through her book as well as her blog. Check it out at, MicheleCushatt.com, I think you will find a kindred spirit. :D

Thanks for letting us know about this website and the book. I wasn't aware off its existence

It looks very interesting and relevant.

"Undone"
http://michelecushatt.mybigcommerce.com/undone-a-story-of-making-peace-with-an-unexpected-life-paperback-book/
.

Note: The topic of "books" has come up here on the Forum several times before, for example:

BOOKS we read and which help...
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44129&p=317202#p317202

There are also several members here who have recently published books or e-books. Maybe some of them will chime in with more information.

Lee
Posts: 5557
Joined: Sun Apr 16, 2006 4:09 pm

Re: The Miseries - But 'Hey I have it pretty good...'

Postby Lee » Thu May 31, 2018 3:08 pm

Cancer is a shock to the body. It's not like dealing with a common cold. You are going to have some good days and some bad days. I think part of the crying process is coming to terms with your diagnoses, the fears associated with it and knowing that your life will not be the same. Cancer is a game changer.

What you are experiencing is normal, part of the process.

Lee

P.S. I believe they like to wait 6-8 weeks following radiation before doing surgery.
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!

SteveNZ
Posts: 103
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: The Miseries - But 'Hey I have it pretty good...'

Postby SteveNZ » Sat Jun 02, 2018 5:13 am

Soccermom2boys wrote:Just a thought, but when I was first diagnosed in August of 2015 I stumbled across a book by Michele Cushatt—she was writing about her recent experience with cancer (tongue) in her memoir “Undone”. Michele is very steadfast in her faith and I think you will greatly enjoy and find comfort in reading through her book as well as her blog. Check it out at, MicheleCushatt.com, I think you will find a kindred spirit. :D

Thank you for that.

Tomorrow I must face my church for the first time in many weeks. (*Have been in another town for radiation-Chemo)
A great little Salvation Army Corp being folk from all parts of the community.
A group of folk who really love my wife and I, and I can see more than ever how much they care.
I want to be with them again but I even feel a bit scared to turn up..... all normal I know.
I just want to say 'thank you' to them.
Hopefully not cry too much.
To return to a close loving fellowship like that can be scary when you have been away fighting cancer.
What do you say when so mixed up?
How do you appreciate folk who I now know are really caring not just 'churchy type members who have to care because the bible says so'?

I will work it out fine but realise that everyone in my life, family, friends etc, are not the same to me anymore. They have not changed I have!
Thanks for listening to my rave...... life has certainly changed.
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

heiders33
Posts: 222
Joined: Sat Nov 04, 2017 11:08 am

Re: The Miseries - But 'Hey I have it pretty good...'

Postby heiders33 » Sat Jun 02, 2018 6:44 am

I’m part of a church as well, and they were a large part of my caretaking team along with my family. I found myself just saying “thank you” a lot because I didn’t know what else to say. Also I sometimes inserted a sense of humor to help put people at ease. But you are right, your relationship with people changes.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI scheduled

User avatar
O Stoma Mia
Posts: 1322
Joined: Sat Jun 22, 2013 6:29 am
Location: Manila, Leyte Gulf

Re: The Miseries - But 'Hey I have it pretty good...'

Postby O Stoma Mia » Sat Jun 02, 2018 8:48 am

SteveNZ wrote:...Tomorrow I must face my church for the first time in many weeks...
What do you say when so mixed up?..

I'm sure you will do just fine when it comes time to show up tomorrow. It's normal to want to be with old friends and just say 'Thank you".

This has been done here several times before on this forum.

Here's one example from a few years ago:

https://www.woosternaz.org/life-stories/leighann-sturgin

There was another example in 2014 when a member here returned to his home town after spending some time in treatment up north at MSKCC. He was asked by his pastor to deliver the Christmas 2014 sermon, which was recorded and then uploaded to the church's website. He was later asked to speak at the church's Easter 2015 service. Both times he spent almost an hour talking to the people, mainly about things like the meaning of life. I don't think he even mentioned the work "cancer" once. But he left a legacy of two recorded messages for the benefit of fellow church members.

Take care. I know you'll do just fine. Life is tough, but sometimes you just have to hang in there and "press on".

NHMike
Posts: 1354
Joined: Fri Jul 21, 2017 3:43 am

Re: The Miseries - But 'Hey I have it pretty good...'

Postby NHMike » Sat Jun 02, 2018 10:30 am

The surgeon ordered an MRI four weeks after chemo and radiation ended and the tumor shrinkage was over 90%. I already knew that it was substantial because it was so much easier to go to the bathroom. You take those little bits of good news when you can.

I’ve been in treatment for almost a year and it is hard stuff to got through. I think that I have another five months to go but even then, it will be the body needing some time to adjust and recover. The break is a good time to recover and take a break as in travel or a vacation as the next phase will be tough and require recovery time though it will be a different kind of tough.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

SteveNZ
Posts: 103
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: The Miseries - But 'Hey I have it pretty good...'

Postby SteveNZ » Sat Jun 02, 2018 8:13 pm

Church was great today.
Folk greeted us so well, really let us know they were there for us and they cared.
Haha - There is a nice lady who often gets a bag of sweets (I know probably not healthy) to share with the kids and me. She knows I am fond of them so today went and purchased a whole bag just for me to show she cared.

The bible shares well ......... that the greatest Christian gift you can share together is Love... Boy it is true. :D :D
Bless you all heaps
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.


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