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Stage 4 Bowel Cancer at 46


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#26 mum2brodie

Posted 13 January 2016 - 01:13 PM

Steppy just crampy pain. bloating, IBS stuff in the early part.  Some foods would just go through me.  That is why my Dr thought it was food things.  I was told to keep a diary of what food upset me.

Then early last year.  I would have this odd cramp that would just buckle me over.  

I could show you right where the cancer was.  All the Dr told me I was crazy.  Cancer doesn't cause pain unless its advanced and I wasn;t advanced.  Yeah they got that wrong.

Anyway I would go from constipated to runs.  Just feeling uneasy after eating.  (they found out I also had an ulcer in my stomach) which is common.  Heartburn.

Then my poo started coming out really thin.  Like pencil thin and I felt like I had never really emptied.  I would have the runs just standing up for a while.  Like doing the supermarket shopping.  Like all the gases building up.

When I went away the runs where so bad (again thought it was Thai tummy).   That there was blood but my Dr said and I can still hear her saying it so clearly.  "Its probably just due to having the runs so much".

In Australia in 2015 there was 17,070 people told they had bowel cancer.  Of that group nearly 20 cases were early 40's.  33 cases at  45-49 age group.  And this cancer has always been told to us its an older persons cancer.  Which it still is. But we are getting as young as 12 year old getting this cancer.

We need better screening for it.  The age group for Government screening is 50+.   It needs to come down to 35+ or even 30 year old.  

I had my colonscopy done at a day clinic in Bayswater Melbourne and I was only out of pocket $100.00.

If only I had done it earlier.

#27 Chchgirl

Posted 13 January 2016 - 02:51 PM

My husband found out when he was constipated and couldn't go to the loo for weeks...we were living in Nz and he had to beg to get a scan, they were reluctant as you have to pay there, we didn't care..it wasn't till he got really sick and ended up throwing up green stuff I forced him in an ambulance and he went to emergency, and it was found through the scan that he had a blockage in the bowel from the cancer..if only he had screening as well...I do screening regularly now..

We came back to Australia for cancer treatment though...much better here in my opinion..

Good luck with everything, I really hope for the best for you xx

#28 Maserati Mum

Posted 14 January 2016 - 11:02 AM

deleted

Edited by Maserati Mum, 04 April 2018 - 02:27 PM.


#29 Maserati Mum

Posted 14 January 2016 - 11:08 AM

~~

Edited by Maserati Mum, 04 April 2018 - 02:27 PM.


#30 steppy

Posted 14 January 2016 - 11:13 AM

Thank you for answering mum2brodie. I think I will go have some tests seeing as I am in this age range and have IBS symptoms sometimes.

I hope like hell that you get through this.

#31 Bone Apple Tea

Posted 19 January 2016 - 05:25 PM

Firstly mum2brodie, I am very sorry to read you have this diagnosis.  I've been thinking about you and truly hope you will be one of the survivors.

On another note, I want to thank you for posting the symptoms that you listed below.  I was shocked and scared because I've been experiencing very similar symptoms and they just aren't going away.  I've had a referral for a colonoscopy since the end of November but was procrastinating big time.   Reading your post scared me into action.  I had a couple of polyps removed a year or so ago and was terrified something had been missed.  Had my colonoscopy today and have been told I have diverticular disease and hemorrhoids.  The doctor also said it sounds a lot like I have IBS.  Anyway without your post I would still be procrastinating and just want to thank you for making us aware of what to look for.    


View Postmum2brodie, on 13 January 2016 - 01:13 PM, said:

Steppy just crampy pain. bloating, IBS stuff in the early part.  Some foods would just go through me.  That is why my Dr thought it was food things.  I was told to keep a diary of what food upset me.

Then early last year.  I would have this odd cramp that would just buckle me over.  

I could show you right where the cancer was.  All the Dr told me I was crazy.  Cancer doesn't cause pain unless its advanced and I wasn;t advanced.  Yeah they got that wrong.

Anyway I would go from constipated to runs.  Just feeling uneasy after eating.  (they found out I also had an ulcer in my stomach) which is common.  Heartburn.

Then my poo started coming out really thin.  Like pencil thin and I felt like I had never really emptied.  I would have the runs just standing up for a while.  Like doing the supermarket shopping.  Like all the gases building up.

When I went away the runs where so bad (again thought it was Thai tummy).   That there was blood but my Dr said and I can still hear her saying it so clearly.  "Its probably just due to having the runs so much".


#32 IamzFeralz

Posted 20 January 2016 - 08:37 PM

Just sending my thoughts.  I have a strong family history of bowel cancer in my family and have been having colonscopies every 3 years since my 30s.  I can't believe how dismissive your doctors were of your concerns.

#33 Amal13

Posted 20 January 2016 - 09:07 PM

You are such a brave woman and thank you for sharing your story. Your son is lucky to have you as his mum.

Edited to add that there is a great traditional Chinese medicine practitioner in sydney that oncologists refer patients to. He has lots of testimonials. Not sure where you are but let me know if you want his details.

Edited by Amal13, 20 January 2016 - 09:12 PM.


#34 dancingmama

Posted 25 January 2016 - 08:47 PM

Hi mum2brodie. I am thinking of you and your family in such a dreadfully hard situation. I truly wish you didn't have to go through such a horrible thing. You asked if there were any positive stories and I thought I would share one. My cousin  (who was in her 50s at the time) was diagnosed with stage 4 bowel cancer with lung metastases 8 years ago. She had all treatment available, including the removal of her right lung. It was gruelling and it was very scary for her family, but she has now been cancer free for over 5 years. You can beat this. Please keep us up to date with how you are going. We're wishing you all the best

#35 mum2brodie

Posted 07 February 2016 - 11:59 PM

View Postdancingmama, on 25 January 2016 - 08:47 PM, said:

Hi mum2brodie. I am thinking of you and your family in such a dreadfully hard situation. I truly wish you didn't have to go through such a horrible thing. You asked if there were any positive stories and I thought I would share one. My cousin  (who was in her 50s at the time) was diagnosed with stage 4 bowel cancer with lung metastases 8 years ago. She had all treatment available, including the removal of her right lung. It was gruelling and it was very scary for her family, but she has now been cancer free for over 5 years. You can beat this. Please keep us up to date with how you are going. We're wishing you all the best

Thank you Dancingmama.  Those are the stories I need to hear to keep me on track.

It is hard some days to stay positive.  I know we are all going to dye some day but to know that your days are possibly outnumbered and going through the gruelling chemo.  

Some positive news helps to see a bit clearer again. xx

#36 mumto4boys

Posted 05 May 2016 - 11:21 PM

Mum2Brodie, I just read an update on your health in another thread where you were supporting somone else.

It wasn't appropriate to say it there but I just wanted to say how thrilled I am for you.

I hope the immunotheraphy continues to work well for you.

#37 babygirl03

Posted 12 June 2016 - 10:18 PM

mum2brodie, I came across your post recently and have been thinking of you since. Like Coolbreeze, I'm sure I was in the same cycle group from the US based forum as my dd was a Nov 2003 baby.

I hope your treatments are working well for you and your positive outlook will get you through the harder days.

I also would like to thank you for sharing your story and prompting so many people, myself included, to get our long put off colonoscopy done.

Wishing you the very best.

#38 mum2brodie

Posted 08 May 2017 - 02:12 PM

Wow I can't believe it has been so long since, I updated.

Well I am still here and officially I have been in remission for 12 months.  I have still been on Chemo every two weeks for 3 days plus immune therapy it was hard.  I always thought once in remission everything stopped.  But being Stage 4 and also not knowing about how the immune therapy outcome would be.  I was kept on it.

Last December my Onc stopped the chemo for a break over christmas but I was still having immune therapy every two weeks.  My skin was a mess from chemo and my body needed some time to heal.

In March I had all my scans done again and again clear scans. Wahoo..
I am pretty much a miracle.

Then in April my Onc wanted to try doing something that is not normally done when there is no cancer.  But he wanted to hit me with 6 weeks of being hooked up 24/7 with chemo and radiation every working day to my neck and stomach areas, where the cancer had spread to.

It was sheer hell.  Doing chemo for 3 days every two weeks at least gave me time to rest before going into the next round.  

Last week I was week four of chemo and not even half way with radiation when I had a near breakdown.  So I am now only on radiation and have only 9 more sessions to go.

This doesn't mean I am cured and if the cancer does come back in these areas, I won't be able to have radiation again.

Being Stage 4 with using chemo and immune therapy.  It saved my life.  But I live with a life sentence of knowing it may come back.  

Hopefully I am the new face of living with Stage 4 and surviving.

With each passing month and year.  Hopefully our Government will spend money of immune therapies for all cancers.  I was just lucky that I got to trial it.  

I have real hope now.... That I can start my new normal life.  My body is wrecked.  I have lost muscle tone and my brain is not like it used to be.  I have to start with loads of rehab..... But I have that option now.

2015-2016 Where pretty dark horrible days.  Not knowing if that was the best my life was going to be.  Until it was time to exit the side door.

Yes Babygirl it was probably me.  I was on a couple of IVF boards.  Got pregnant and was due in 2003 but lost that pregnancy and went on to have Brodie in Jan 2004.    It seems like such a long time ago.

If anyone has or wants help with Bowel Cancer please feel free to PM

Felicity

#39 Loore

Posted 08 May 2017 - 02:20 PM

I've not posted before, but I have followed your story and you have often been in my thoughts.  Congratulations on your remission.

#40 But seriously

Posted 08 May 2017 - 02:22 PM

great news! You are a champion

#41 leosmum

Posted 08 May 2017 - 02:24 PM

Hi mum2brodie, you sound like one brave, tough woman! I'm so pleased to hear you're in remission and I hope you stay there. Your initial post last year spurred me into action to finally have my colonoscopy done, which came back clear. Thank you so much for sharing your story. Xx

Edited by leosmum, 08 May 2017 - 03:35 PM.


#42 Lifesgood

Posted 08 May 2017 - 02:42 PM

When I saw this thread was updated my heart was in my mouth. I'm so happy for you mum2brodie, I can't tell you how delighted I feel for you and your family. What a tough road you have been on - are still on.

Wishing all the best for continuing remission.

#43 Ianthe

Posted 08 May 2017 - 02:50 PM

That's a good update. I hope you can adjust to your new 'normal' soon.

#44 lazycritter

Posted 08 May 2017 - 03:05 PM

Thank you for posting and sharing your news.

You've made me decide to talk to the docs about my weird bowel issues.  

I haven't been prioritising my health but your words about your son made me think about it in a different light.

#45 steppy

Posted 08 May 2017 - 03:19 PM

Oh that is such good news. I am glad you are having such positive results - may they continue to be positive!

#46 Zesty

Posted 08 May 2017 - 03:41 PM

That is an amazing update! Thank you so much for sharing your good news.

Edited by Zesty, 08 May 2017 - 03:41 PM.


#47 TheGreenSheep

Posted 08 May 2017 - 03:42 PM

Awesome update. Just awesome.

#48 Sancti-claws

Posted 08 May 2017 - 04:24 PM

Thank you for your update, M2B - it is so very wonderful that you are still alive and in remission!!  I cannot even imagine how altered your mindset must be after going through (and still going through) all that you have.

How wonderful - and scary - and what a rollercoaster.

#49 Soontobegran

Posted 08 May 2017 - 04:42 PM

Thank you for your update.....That is the best post today.

#50 coolbreeze

Posted 09 May 2017 - 06:03 AM

Always thinking of you and relieved to see this positive update.
May 2017 look up!
CB


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