Support thread for those with cancer, terminal illness, or any life altering physical ailment. For caregivers as well

oh i forgot to log in before post lol

Thank you.

Have now just got word that my partner best mate is going to be flying on Malaysian airways in very near future, just to add to my stress!!!

Hi Paige. Welcome back!

Joannie, I too, think about you constantly. I hope you are managing pain and symptoms well.

a few years on and my partner fell really ill with intencse ulcerative colitis so i had to quit my job to take care of her and run everyone around. all was looking on the up and up and so i started working again and furthering my studies on IT. when my parter started going down hill again but alot worse this time. going against my opinion my partner has been on drug trial after drug trial with no real let up of her situation.

Firstly my thoughts are with all of you going thru a tough time.

Well, my story is..........
Gave up my baker job of 8 years to move towns and be with my lovely partner, she already had 3 kids and i decided it was easier for me to move than to uproot the little ones.

a few years on and my partner fell really ill with intencse ulcerative colitis so i had to quit my job to take care of her and run everyone around. all was looking on the up and up and so i started working again and furthering my studies on IT. when my parter started going down hill again but alot worse this time. going against my opinion my partner has been on drug trial after drug trial with no real let up of her situation.
ontop of all that, this happened

[link to www.stuff.co.nz]

now for the last year just been dealing with test after test after test, my daughter has changed from an outgoing high achiever to a quite almost failing at school.

have tried everything i can think of but it sucks seeing my partner and girl in this way and there is nothing i can do about it.

Daily struggles of watching my partner rocking back and forth holding her stomach moaning in pain.

i now this is nothing compared to alot of posts on here but even just venting this is easing some of my mind set.

with all the doctors visits, kids stuff, daughters counciling, kids sports umongst all the household duties i am so run down and now the government has decided she is not sick enough to keep paying us and are trying to force one of us into work, more pressure on her than me for some reason which has just made me mad. until all this i have worked all my life and see all these other no-hopers on the benifit who can work but decide to milk the system.

regards
TIRED AND MAD from NZ :(

Has she considered experimenting with cannabis oil? It works very well for many with crohns and uc.

, So as much as i know it would help i can bring myself to bring that sort of thing into the house :(

If only they would admit that Sativex is really medicine, then she could have a fully legal alternative

[link to www.leafscience.com]

Although medical marijuana is illegal in New Zealand, a pharmaceutical cannabis extract has been available since 2008 for patients with multiple sclerosis. Other conditions may qualify, but the health ministry must approve all requests first.

Even still, only four people have an active prescription for Sativex and only 48 have ever been approved, local media TVNZ reports.

Wanted to share this here. I just stumbled upon it, right when I needed it.

Firstly my thoughts are with all of you going thru a tough time.

Well, my story is..........
Gave up my baker job of 8 years to move towns and be with my lovely partner, she already had 3 kids and i decided it was easier for me to move than to uproot the little ones.

a few years on and my partner fell really ill with intencse ulcerative colitis so i had to quit my job to take care of her and run everyone around. all was looking on the up and up and so i started working again and furthering my studies on IT. when my parter started going down hill again but alot worse this time. going against my opinion my partner has been on drug trial after drug trial with no real let up of her situation.
ontop of all that, this happened

[link to www.stuff.co.nz]

now for the last year just been dealing with test after test after test, my daughter has changed from an outgoing high achiever to a quite almost failing at school.

have tried everything i can think of but it sucks seeing my partner and girl in this way and there is nothing i can do about it.

Daily struggles of watching my partner rocking back and forth holding her stomach moaning in pain.

i now this is nothing compared to alot of posts on here but even just venting this is easing some of my mind set.

with all the doctors visits, kids stuff, daughters counciling, kids sports umongst all the household duties i am so run down and now the government has decided she is not sick enough to keep paying us and are trying to force one of us into work, more pressure on her than me for some reason which has just made me mad. until all this i have worked all my life and see all these other no-hopers on the benifit who can work but decide to milk the system.

regards
TIRED AND MAD from NZ :(

Here is the supplement list I was talking about. It comes from someone who has been through it and what worked for them. The PDF is at the bottom of the page.

[link to completeautosp.com]

If all we can do for you is to give you an opportunity to vent than I am glad...

I am sure you have tried probiotics? Perhaps homeopathic therapy would help?

[link to www.onlinehomeopathictreatment.com]


Is there any kind of work you can do at home?

Good luck and best wishes to you, your partner and of course the children.

Just beautiful and thank you so much for finding that and sharing.

I think going out and living ones' life is the most difficult goal there is, but one we all have to try...

Everyone remembers learning to ride a bicycle? LOL, I had skinned knees for weeks, but no matter how many times I fell down someone was always there telling me to try again...and then finally the freedom when that damned bike was finally mastered...

Life is like that...

Kisses for you all today...

Firstly my thoughts are with all of you going thru a tough time.

Well, my story is..........
Gave up my baker job of 8 years to move towns and be with my lovely partner, she already had 3 kids and i decided it was easier for me to move than to uproot the little ones.

a few years on and my partner fell really ill with intencse ulcerative colitis so i had to quit my job to take care of her and run everyone around. all was looking on the up and up and so i started working again and furthering my studies on IT. when my parter started going down hill again but alot worse this time. going against my opinion my partner has been on drug trial after drug trial with no real let up of her situation.
ontop of all that, this happened

[link to www.stuff.co.nz]

now for the last year just been dealing with test after test after test, my daughter has changed from an outgoing high achiever to a quite almost failing at school.

have tried everything i can think of but it sucks seeing my partner and girl in this way and there is nothing i can do about it.

Daily struggles of watching my partner rocking back and forth holding her stomach moaning in pain.

i now this is nothing compared to alot of posts on here but even just venting this is easing some of my mind set.

with all the doctors visits, kids stuff, daughters counciling, kids sports umongst all the household duties i am so run down and now the government has decided she is not sick enough to keep paying us and are trying to force one of us into work, more pressure on her than me for some reason which has just made me mad. until all this i have worked all my life and see all these other no-hopers on the benifit who can work but decide to milk the system.

regards
TIRED AND MAD from NZ :(

BUMP for prayers for Joannie.

Hi, I'm so sorry to hear what you are going through.

Has your partner ever had a serotonin test done?

If not she should, high serotonin levels in blood and 24 urine tests are indicative of carcinoid cancer. CC is often misdiagnosed as IBS, UC, Crohns, etc.

While CC is very rare it often is over looked for many years and a simple blood and 24 urine test should be done if she has suffered for so long.

Some signs and symptoms include:

Flushing of the face and neck (appearance of deep red color, usually with sudden onset)
Diarrhea, nausea, vomiting
Rapid heart rate
Wheezing, coughing, difficulty breathing


I would check all medication she is on and google search to see if they raise serotonin levels, when they are high a patient experiences severe gastro upset....

Good luck to both of you, I hope this can help!


This site explains the blood and 24 hour urine test:

[link to labtestsonline.org]

This site is about carcinoid cancer:

[link to www.carcinoid.org]

This site is Diagnosing and Monitoring Carcinoid Syndrome:

[link to www.carcinoid.com]

This site is serotonin syndrome:

[link to www.webmd.com]

These sites are foods and meds that can cause serotonin syndrome or false positives:

[link to panicdisorder.about.com]

[link to www.livestrong.com]

Many people with gastro issue are given proton pump inhibitors, there drugs can raise serotonin and actually cause worse gastro issues and pain, check to see if she is taking and of these:

[link to www.medicinenet.com]

What great information and thanks so much for taking the time to share it...I pray it helps.




Sunday afternoon hugs for everyone...

Gem hasn't logged on in a month. I hope she is doing OK.

Thanks Davvi,

I'm just learning about this as I spent a week in the hospital a few months ago.....they could not figure out what was wrong so it was just labeled IBS.

I went to an endocrinologist because I have thyroid symptoms and this new IBS problem....well my first blood test showed I had extremely high serotonin so I had to have the 24 hour urine done and that was normal, but now we have to figure out why its in the blood.....I am positive it's because they had me on Prilosec for way too long!

They found thyroid nodules that have to be removed as they are undetermined yet they display all the characteristics of cancer....yahoo!

So I started researching if the thyroid nodules could cause the serotonin level to rise....only one thyroid cancer can and it tested negative thank goodness!

Needless to say, I found all the sites I posted....I hope it can help anyone else, even though it's very rare, it still might help someone with earlier diagnosis....most people are told IBS, UC, etc., and by the time you have carcinoid syndromes it can be kinda too late to do much......

We must all be proactive because it's too easy to just accept what a doctor tells you....research everything!

My mom was diagnosed with throat cancer, she had chemo and radiation for 9 weeks, they did a pet scan and gave her clean bill oh health. Four months later she had a bump on her arm and new pet scan shows cancer everywhere in her soft tissues....radiologist missed two huge spots on her previous pet....I read them the riot act when I discovered them on my own....

Be vigilant, get all your records and ask questions!

Oh my heavens, I am so sorry...but glad that you have found this thread and we offer you our prayers and best wishes.

Do you think that Prilosec could have contributed to your condition? My father has been on Nexium for at least ten years now and has asked his doctor for a stronger dose which the doctor refused...My dad was angry and ready to find a new doctor, but I think he needs to stop it altogether as after awhile like nasal sprays the more you use it the more you need it...

I am going to show him your research and I thank you so much for it...

Many hugs for you and your mom. X

Thank you for your kind words for me and my mom....

Yes, I think the Prilosec exacerbated the IBS symptoms after I was on it for 3 months....I never had used it before my hospital stay and it worked well for those 3 months until I had a set back.....protein pump inhibitors can raise serotonin levels that can cause serotonin syndrome....it's kind of a vicious cycle....protein pump inhibitors should be two weeks on four months off, something like that.......

I hope you dad can find some relief!

So glad I found the thread too, such nice people!

I just met somebody who's brother went on hospice with the usual six months to live, stopped all the drugs they had been on to treat his cancer....perked right up and lived for five more years, comfortable, eventually dying of a heart attack while gardening.

The surviving brother is not a big fan of chemo for some reason.

I just met somebody who's brother went on hospice with the usual six months to live, stopped all the drugs they had been on to treat his cancer....perked right up and lived for five more years, comfortable, eventually dying of a heart attack while gardening.

The surviving brother is not a big fan of chemo for some reason.