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

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SteveNZ
Posts: 97
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

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

Postby SteveNZ » Sun Jun 03, 2018 7:41 pm

DAY 6 -Since Radiation Therapy
SNIFF... Sob... OWWWWWWWWWWWWWWW :( :shock: :( :( :( :(
WOW it hurts like ...... to pass faeces. All the numbing drugs and all.

And when you start you just can't say '..time to stop now relax..'. Partly because some of the muscle motion seems automatic in there and partly because it is so, so painful to have muck stuck in the painful area. It won't move back so you just have to whimper and push it forward or else scream away inside....
All sorts of mucus and muck as well (I was warned about it all) BUT so, so unpleasant.

After the 20minute event I just feel so tired (honestly panting..oh brother), shaking and nauseas!
I can grit my teeth so to speak but you cannot turn off the underlying bodily reaction (almost like being in shock ?????) that just plods along.....YUK

Feeling much, much better now even over the time writing this.
Now for a clean up of my rear end etc..... A fair bit of radiation burning, skin cracking etc :(

Welcome Steve to the world of fighting colon-rectal cancer. And I am winning pain and all.
Thank you folk for being there to listen.... You are all such a great team.... :D
Last edited by SteveNZ on Sun Jun 03, 2018 11:27 pm, edited 2 times 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.

NHMike
Posts: 1332
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Jun 03, 2018 7:44 pm

One of the responses that I had to the pain was to stop eating. Of course that's not sustainable.
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: 97
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

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

Postby SteveNZ » Sun Jun 03, 2018 8:35 pm

NHMike wrote:One of the responses that I had to the pain was to stop eating. Of course that's not sustainable.

They advised me to try hard to keep things moving.
I admit though I have slowed right down with eating to have as few 'rear end events' as possible. But the thought of getting myself bunged up and having to aggressively start it all again freaks me out..... that will really hurt.
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.

SteveNZ
Posts: 97
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

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

Postby SteveNZ » Thu Jun 07, 2018 5:36 pm

DAY 10 after radiation - Things have 'just' calmed a bit but WOW I have one painful digestive system.
Am being careful what I eat but after I eat or drink anything it all moves a bit inside and has you whimpering. It is OK I just am a bit demonstrative during such times. Especially when on the seat attempting to pass a poo! :(

The radiation must do quite a job on various healthy tissues as it also fights the cancer.

This sounds silly but the wait until my operation (tumour very low in my rectum with all it means) is not a nice time to go through.
It is almost like being in a prison awaiting some form of future punishment with the clock ticking away. I knew well beforehand the necessary steps to beat this thing but never realised how drawn out it can be. There is also so much of this unknown '..must wait and see..' atmosphere as until the surgeon opens me up he will not know for sure what is what.

Yet I am a lucky one with a great chance of beating this. :D
Thanks for all being there....
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.

Caat55
Posts: 385
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Thu Jun 07, 2018 5:44 pm

Yes, everything feels drawn out. I feel your pain, literally. It is really important to use this time to heal the areas damaged by the radiation. For me, after surgery my issues flared up a little down there. Also, the diet after surgery is restrictive so eat things like fresh fruits, veggies, nuts and seeds now.
S
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

NHMike
Posts: 1332
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Jun 07, 2018 5:59 pm

I had a scan done shortly before surgery so that the surgeon had a better idea as to what she would be working with. She was upbeat and positive. I would have been a nervous wreck but I went running and playing tennis and that kept my mind from becoming a nervous wreck.

It is very long. I'm almost at the end of Adjuvant Chemo - and coming up on my 1-year anniversary of the diagnosis.

So we've been there and know how it feels and how rough it is. But really big numbers of people get through it as I'm sure that you will too.
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

mobrouser
Posts: 14
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

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

Postby mobrouser » Thu Jun 07, 2018 10:29 pm

This may sound odd, but I found that Lamaze type breathing exercises are helpful - as a distraction from the pain and to help with pushing.

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018

SteveNZ
Posts: 97
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

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

Postby SteveNZ » Fri Jun 08, 2018 6:31 pm

mobrouser wrote:This may sound odd, but I found that Lamaze type breathing exercises are helpful - as a distraction from the pain and to help with pushing.

8) mob

Haha .... I was doing so anyway. Pushing out sounded so much like what ladies go through in child birth so I looked at the techniques and at hospital they showed me some tricks also. It does sound odd but the pain requires all the help you can give.

I feel I am over the worst of it now and hopefully things get a bit better. :D
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.

NHMike
Posts: 1332
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jun 08, 2018 6:47 pm

SteveNZ wrote:
mobrouser wrote:This may sound odd, but I found that Lamaze type breathing exercises are helpful - as a distraction from the pain and to help with pushing.

8) mob

Haha .... I was doing so anyway. Pushing out sounded so much like what ladies go through in child birth so I looked at the techniques and at hospital they showed me some tricks also. It does sound odd but the pain requires all the help you can give.

I feel I am over the worst of it now and hopefully things get a bit better. :D


Things got better for me quite quickly in the second and third weeks. In fact I felt like my old self between then and surgery.
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: 97
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

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

Postby SteveNZ » Tue Jun 12, 2018 8:16 pm

HURRAY things are getting better...... :D :D
I have an awful sore guts, especially after meals, as things move around down there.
But 'pooing' is no longer the terrible agony it was, just sore.

ISSUE-I just seem to automatically get constipated and need medication to keep it all soft (I thought my wiser diet would help more) and force things to move. Even then to remove the plug is 'one painful push'.

Thank you all for being there. :D
Steve
Last edited by SteveNZ on Thu Jun 14, 2018 7:59 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.

retiredteacher
Posts: 70
Joined: Sat Oct 21, 2017 1:34 pm

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

Postby retiredteacher » Thu Jun 14, 2018 7:59 am

Steve, this radiation neoadjuvant phase is the most difficult, I believe, for all the reasons you have so colorfully and accurately described. Are you walking much? It's a decent way to keep the guts awake and working ... hydration also help .... congrats on making it around this corner!
63 yo female
RC 9/13/17 Adenocarcinoma 6.3 - 7 cm tumor (PET)
6 cm, or maybe 8 - 10 cm fr AV (PET)
G2: Moderately differentiated (Path rprt), MSS
Unstaged, guesstimate T3N0M0 PET, no MRI, no ultrasound
2500 Capecitabine/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 0.3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3

SteveNZ
Posts: 97
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 16, 2018 6:14 am

Passing Poo Problems - haha I like the rhyme.

For some reason as I now heal from radiation I have pretty well no feeling in my rectum?? From pain straight after to nothing three weeks down the track. Seriously today I had to look in the bowl (or hear the sound of it falling) to know if I have passed anything. I cannot feel when I am full (but I know from time without passing plus something like stomach cramps) nor do I feel much at all flow when I push? Only really solid lumps give me a form of sensation right near the outside.
Having said that I also need a fair bit of medication plus liquid to keep things moving through my bowel at all so things are finally soft.

Has anyone met this? It is a bit freaky as I can fill my pants very easily and must never ever fart. I just comes out a bit just by passing urine. YUCK...!?

JUST EDITED 17th June- It seems to be that soft faeces is not enough (????????) to trigger the, 'I am full time to poo' response. Only when blocked with pretty awful solids do I get the urge. By then my whole 'guts' is also in pain letting me know I am blocked. Rats...... I need to regularly take medication to that similar to before the colonoscopy (called Molaxole here) just to be regular. We will get there.
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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