NEW - From New Zealand - Great folk here

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SteveNZ
Posts: 147
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

NEW - From New Zealand - Great folk here

Postby SteveNZ » Tue Apr 24, 2018 9:07 pm

Hi,
I am Steve from new Zealand. With myself I had pain/weird stools/bleeding last year and finally had a colonoscopy. Only to discover I have colon-rectal cancer. Yuk....

What I want to share is how here in NZ we are treated so well. Hmmm... well at least in this part of the country we are. We have a health system similar to the UK where our highish taxes fund all medical a bit like a compulsory medical insurance. We elect folk to manage our local 'Health Boards' at the same time we vote for our local body officials (Mayors/Councilors).

HOW NZ FOLK 'KIWIS' DO THINGS
As soon as it was diagnosed I immediately was assigned an oncology nurse/counselor who does everything for you. She continually phones after every event to see how you are and takes every question seriously. And we can call any time. Wonderful.

Because our town does not have a radiation therapy unit we (a patient plus a care giver - being my lovely wife) are paid to travel to another city, Christchurch city, and stay free of charge in a special motel like units. Called 'daffodil house' owned by the cancer society. In New Zealand 'Daffodil day, Daffodil house-lodge etc' are all cancer society links. It is wonderful here. There is a free shuttle to the clinics and amazing other '..inmates..' to interact with. We all get together for happy hour in the lovely common room almost every day. Depends who is up to it!? There is even an electric organ to wind up when folk need a sing along to boost spirits. And there are these volunteers who leave home cooking cookies/cakes etc every day. They call themselves 'The Good Bitches Baking'! TRUE! *Now please note that in New Zealand that title is not taken offensively at all it is like a wild compliment. PS-Here in New Zealand we call cookies 'biscuits' but I am married to a lovely US wife and gave up trying to convince her they were biscuits ages ago...LOL

FIRST DAY-I was so impressed as when we went to the oncology ward. We stood at the desk and advised we were new (we looked the part anyway) and everyone just took us in, gave us a drink (the waiting room has all of these free facilities) and took us into the family so to speak. And there are cancer society volunteers everywhere helping as they can. Listening to our moans and supplying little things like clothing (hats/scarves) and even jig saw puzzles to sit and do. These really help keep your mind off things.

Yes it is a pretty miserable thing to go through. I have combined radiation/chemo therapy for the next few weeks. It is early days and I am feeling '..BLOODY ROTTEN..' already. Then after a few more weeks I will have surgery. It depends on what they find as to the outcome. I jokingly share (well with some folk anyway) that I probably won't be able to take part in a 'farting contest' anymore... Please laugh with me over that.

Still I am a Christian (in the Salvation Army church) and have known my God from my youth so He can worry about it. Mind you in all reverence I want to discuss cancer with Him when we meet. Please laugh with me over that.

Thank you for this site. It has helped me a great deal.
Steve
Last edited by SteveNZ on Sat Apr 28, 2018 7:09 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.
August 27th-November 2018 - Surgery and long, long recovery
*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.

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: NEW - From New Zealand - Great folk here

Postby CRguy » Wed Apr 25, 2018 8:00 pm

Welcome on Board my friend
there is a contingent of Aussies, Kiwis and Canucks hanging around here
so you have stumbled upon, dare I say, a common wealth :shock: :mrgreen: of info and good folks
including members from all around the globe

Most members are USA based so a lot of discussion will reflect that ... but
... BUTT ... at some point we all speak the same language = kickin' colorectal cancer's ASS !
I believe that requires no translation !!!!!

Cheers and Harmony on the Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: NEW - From New Zealand - Great folk here

Postby Caat55 » Wed Apr 25, 2018 10:08 pm

It doesn't matter where you live, we are in this together. Advice.. drink a lot of fluids. Treat the area being irradiated with care, Miaderm is a good emollient and sake to use during treatment.
Be good to yourself. Since you are away from home I guess with can't work so walk, sleep and find joy wherever you can
Susan
Do at 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
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

User avatar
Kick'nAssCancer'sAss
Posts: 248
Joined: Tue Feb 25, 2014 4:38 pm

Re: NEW - From New Zealand - Great folk here

Postby Kick'nAssCancer'sAss » Thu Apr 26, 2018 7:20 pm

CRguy wrote:so you have stumbled upon, dare I say, a common wealth :shock: :mrgreen: of info and good folks


now that's good

Sounds like NZ folks are treated just as well as us Canucks. Apparently I have been told my journey will be close to a half million bucks once I am done next year. My biggest expense to date after the four plus years was hospital parking during treatments. Our system is far from perfect but we don't go broke fighting cancer. I cannot believe what some members have been put through by insurance companies. Profits before patients the good ol'American way
53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED :P
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: NEW - From New Zealand - Great folk here

Postby DarknessEmbraced » Sat Apr 28, 2018 9:36 am

Welcome to the group! I'm sorry for your diagnosis but I'm glad that you're treated so well by your cancer care team in New Zealand!*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
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

SteveNZ
Posts: 147
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: NEW - From New Zealand - Great folk here

Postby SteveNZ » Sat Apr 28, 2018 7:20 pm

Caat55 wrote:It doesn't matter where you live, we are in this together. Advice.. drink a lot of fluids. Treat the area being irradiated with care..........................
Susan


Thank you for that. There is no external effect due to radiation yet but I certainly feel the effects being generally continually sore throughout the area irradiated. If this is early days then 'O'boy'.
Being red haired (well almost grey now LOL) I do not take the sun well and burn very easily so they told me to be pretty vigilant.

FUN JOKE THAT IS A WAY OF COPING: Due to it all and the swelling/tightness I can tell my musical folks I now have a 'higher pitch' when I fart.... :D :wink: Hope that is not out of place.

Bless you all heaps
Steve
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.
August 27th-November 2018 - Surgery and long, long recovery
*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.

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: NEW - From New Zealand - Great folk here

Postby CRguy » Sat Apr 28, 2018 7:26 pm

SteveNZ wrote: I can tell my musical folks I now have a 'higher pitch' when I fart.... :D :wink: Hope that is not out of place.

Not bad sound quality for a one inch speaker :shock:

almost NOTHING is out of place here my friend ....
Cheers
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: NEW - From New Zealand - Great folk here

Postby O Stoma Mia » Sun Apr 29, 2018 2:04 am

SteveNZ wrote:..What I want to share is how here in NZ we are treated so well. Hmmm...

Yes, we have already heard about how kind and helpful the New Zealanders are. It must be nice to live in such a supportive environment.

A few years ago there was a member here who posted a note describing the outpouring of help she received when she was planning a family vacation prior to going into hospice. You can read about it here (click on the link and scroll down until you see the note entitled Cherie).

http://race4life.co.nz/Cherie/index.php/

Like you, she had a spouse who was American. She was from North Island. (It looks like you are probably from South Island)

When she was in the U.S. earlier for graduate studies, she wrote a Master's thesis on art expression of pain. If you are interested, you can read her thesis here:

Body in Pain
https://digitalcommons.georgiasouthern.edu/etd/146

Sadly, she passed away in 2016, but she left a legacy here on this forum.

Utwo
Posts: 285
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: NEW - From New Zealand - Great folk here

Postby Utwo » Sun Apr 29, 2018 2:16 pm

muskokamike wrote:Sounds like NZ folks are treated just as well as us Canucks.
Moneywise it may be cheaper in Canada/NZ.
However from point of view of waiting time and quality of service US is probably better.
You can't get something for nothing.

My GI doctor told me that average Canadian hospitals are better than average US hospitals.
At the same time best US hospitals are better than best Canadian hospitals.

So people who have access to MD Andersen, MSK, Mayo, Cleveland, Dana-Farber, UCLA etc. are getting better care than what we can ever have in Canada. :(
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

User avatar
Kick'nAssCancer'sAss
Posts: 248
Joined: Tue Feb 25, 2014 4:38 pm

Re: NEW - From New Zealand - Great folk here

Postby Kick'nAssCancer'sAss » Sun Apr 29, 2018 6:11 pm

Utwo wrote:
muskokamike wrote:You can't get something for nothing.

My GI doctor told me that average Canadian hospitals are better than average US hospitals.
At the same time best US hospitals are better than best Canadian hospitals.

So people who have access to MD Andersen, MSK, Mayo, Cleveland, Dana-Farber, UCLA etc. are getting better care than what we can ever have in Canada. :(


I can only speak from experience and sincerely doubt that any patient who had access to the above BEST hospitals got any better care than I received from my team at RVH in Barrie and my surgeon in my small town.

I hardly think Canadians are getting something for nothing with our tax burden we are paying for our care. I do like the fact that we don't have to deal with 'profits before patients' insurance companies and can focus all our energies on fighting and hopefully beating cancer.
53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED :P
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/

User avatar
Sophy
Posts: 261
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: NEW - From New Zealand - Great folk here

Postby Sophy » Mon Apr 30, 2018 3:05 am

Hi Steve

sorry to hear about your dagnosis but glad they are taking good care of you at Cch hospital and Daffodil House, they are lovely, I spent 8 weeks staying there on my own in 2016.

Do PM me if there is anything I can help with, as you can see from my signature I have spent quite a few years being looked after by the NZ health system

Cheers
Sophy
dx T3N1M0 Feb 2011 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
June 20 CT shows nodule, bronchoscopy confirms is scar tissue, still NED
Dec 20 stopping Xeloda continue celebrex, cimetedine
Aug 21,March 23 scans show still NED
March 2023 CURED - discharged from Oncology, no more scans or follow up

Thetoad
Posts: 165
Joined: Mon Nov 23, 2015 2:46 am
Location: New Zealand

Re: NEW - From New Zealand - Great folk here

Postby Thetoad » Mon May 28, 2018 4:14 pm

Sophy wrote:Hi Steve

sorry to hear about your dagnosis but glad they are taking good care of you at Cch hospital and Daffodil House, they are lovely, I spent 8 weeks staying there on my own in 2016.

Do PM me if there is anything I can help with, as you can see from my signature I have spent quite a few years being looked after by the NZ health system

Cheers
Sophy

Yep, there are a few of us flightless types on this site. I'm now over 4 1/2 years since surgery and doing ok. But I still get anxious, I suppose we all do...
Emergency extended rt hemi November 2013.
Complete blockage, small perforation.
Stage 2a.
T3N0M0
22 Lymph nodes clear.
No bag.

Yearly appts appts and 6 monthly CEA tests.
Incisional hernia repair, mesh Nov. 2014.
Cellulitus
CEA 1.4 on 28/7/17
27/5/17. Gallbladder removed, open.
Good consultation Feb. 2017
CEA 1.7 on 16/11/17 colonoscopy ok Jan. 2018 :)
Nurse pleased, March 2018. CEA 1.8. One more CEA test and hopefully last appt in November, 2018.
Prostate cancer, Gleason 7 (3+4) Sept. '18.

SteveNZ
Posts: 147
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: NEW - From New Zealand - Great folk here

Postby SteveNZ » Tue May 29, 2018 7:51 pm

Thetoad wrote:
Sophy wrote:Hi Steve

sorry to hear about your dagnosis but glad they are taking good care of you at Cch hospital and Daffodil House, they are lovely, I spent 8 weeks staying there on my own in 2016.

Do PM me if there is anything I can help with, as you can see from my signature I have spent quite a few years being looked after by the NZ health system

Cheers
Sophy

Yep, there are a few of us flightless types on this site. I'm now over 4 1/2 years since surgery and doing ok. But I still get anxious, I suppose we all do...

Thank you folk for that. I appreciate it.
I have just completed initial 5 weeks of radiation and now have to sit it out for about 6 weeks (minimum of 4) before surgery.

I cannot say I am in very good spirits at all. BUT still fighting on.
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.
August 27th-November 2018 - Surgery and long, long recovery
*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: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: NEW - From New Zealand - Great folk here

Postby NHMike » Tue May 29, 2018 8:02 pm

SteveNZ wrote:
Thetoad wrote:
Sophy wrote:Hi Steve

sorry to hear about your dagnosis but glad they are taking good care of you at Cch hospital and Daffodil House, they are lovely, I spent 8 weeks staying there on my own in 2016.

Do PM me if there is anything I can help with, as you can see from my signature I have spent quite a few years being looked after by the NZ health system

Cheers
Sophy

Yep, there are a few of us flightless types on this site. I'm now over 4 1/2 years since surgery and doing ok. But I still get anxious, I suppose we all do...

Thank you folk for that. I appreciate it.
I have just completed initial 5 weeks of radiation and now have to sit it out for about 6 weeks (minimum of 4) before surgery.

I cannot say I am in very good spirits at all. BUT still fighting on.


I'm hoping that you feel a lot better in about two weeks. You're young and should bounce back.

BTW, there's a lot of planning that you could start doing for the surgery.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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