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Anyone recently diagnosed? Starting the journey.


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#51 jules363

Posted 12 March 2014 - 02:48 PM

Oh, and age wise, I am 42, and we have four children…my husband had prostate cancer 2 years ago, so we definitely decided our family was complete before he had his surgery.  I don't know if I am going to have to deal with early menopause, I can't remember it being mentioned on this bowel cancer chemo, and my mets are on my liver, not in the reproductive area.  It would just be one more thing to deal with I guess….

#52 WibbleWobble

Posted 12 March 2014 - 05:13 PM

Sakura and Jules thanks for the tips regarding the port. I think I will ask to get sent home with some drugs just in case. :) How did you o with driving? Did the seat belt go across the port site?


#53 jules363

Posted 12 March 2014 - 07:30 PM

Yes it did.  I wore my seatbelt under my arm for about 2 weeks.  I don't think you are technically allowed to do this without a medical exception, so you might ask about one.  I got away with it, I was just going to plead ignorance if caught.

#54 WibbleWobble

Posted 13 March 2014 - 10:09 AM

Hrumph please check your pm's.

#55 WibbleWobble

Posted 13 March 2014 - 02:58 PM

Julie I think ignoring things is probably pretty normal. It is certainly easier than thinking about reality and worse case scenarios. I think you just do what you have to get out of bed each day and function.
Ouch with your port story. When I spoke to the person doing it, he said it will be much less painful that what I have already been through, so hopefully he is right.


#56 Hrumph

Posted 14 March 2014 - 06:07 PM

Just a quick note from me - just come out of hospital after a two night stay for chemo. Normally only a one night stay but the nausea was out of control.

WW - I have PM'd you - thanks heaps :)

Age - I was 42 & 2 months when diagnosed.

Children - My DP & I are childless not by choice courtesy of major ovarian surgery in 2008 (a whole other story!)

Port - I wish I had one inserted because my veins are copping a right old bashing. It wasn't even suggested as an option at the time I started chemo - maybe because the wanted to get going ASAP.

Location - I am in Victoria in the Macedon Ranges (about an hour out of Melbourne).

Sorry for the lack of personals - really feel like I have been hit by a truck.



#57 WibbleWobble

Posted 14 March 2014 - 06:45 PM

Sounds like you have had a rough couple of days. :( Nausea would not be pleasant, and extra draining if you already aren't feeling crash hot. Can you have a port inserted once you start chemo? It may be worth asking if it is an option.

#58 WibbleWobble

Posted 23 April 2014 - 04:42 PM

Just bumping this up to see if there is anyone else that has been recently diagnosed.

#59 mumto4boys

Posted 04 May 2014 - 11:25 PM

Random stranger just wishing you all the very best. Jules, I think you mentioned your first surgery being this week so will have everything crossed that your surgeons are at their most amazing this week for you.

Edited by mumto4boys, 04 May 2014 - 11:25 PM.


#60 mummabear

Posted 09 May 2014 - 11:20 PM

Another random wanting to wish Jules the very best outcome from surgery. I hope you heal quickly.  

Hoping everyone else is the best they can be too.

#61 KT1978

Posted 09 May 2014 - 11:48 PM

Hi WW,

I only just saw this. My dp had bowel cancer stage 3, 2years ago. He had major surgery, a foot of bowel removed, an illiostomy, six months of chemo (flouricil).

He's good now. He also had his bag reversed. I can answer questions about that if you have any. He will always have a sensitive system now, needs more visits to the toilet, wind, reacts badly to some foods etc but he is healthy and doing well.

His chemo was pretty good, didn't lose his hair, didn't lose weight, he worked part time through it. Mostly he was tired and in bed at 8pm, lots of naps and very dry skin. Nausea.

The physical side of it was like pregnancy (tired, nauseous). The emotional side amplifies everything.

If you have questions, just pm me. (or anyone). I'm happy to share. Xxx

#62 jules363

Posted 12 May 2014 - 11:22 PM

Thanks everyone, geez, you guys are on the ball. You are right, my liver resection would have been last Friday, but 2 months ago I had a bowel obstruction and emergency surgery to fit a stoma.   At first it was thought that this might have been caused by my bowel cancer progressing, but as it turned out, it was just a twist in the tumour that had caused it.  My liver tumours have decreased dramatically with chemo, and my bowel tumour has also shrunk, but it was decided by my team that they would now do the bowel first, as it had not responded quite as well as the liver to treatment and I had the obstruction.   It's a funny feeling that the liver resection would have been done now...I was so focused on it.

I am on full curative plan now, because I have responded so well, all four of my specialist team believe that it is worth trying everything to get me to a cure.  I will have the bowel resection at the end of June (just coming to the end of a six week cycle of chemo and radiation, then I must have a six week break before any surgery), then a months break, then three cycles of chemo to zap the liver again, then the liver will be dealt with.  The liver surgeon is quite confident that my liver is very stable and will hang in there long enough to get through all the surgeries.  After that, there will be a bit more chemo, and the hope that I will be in remission by Christmas.  As I was considered palliative last Christmas, and was told there would be no surgery at all, this is quite the turnaround.  I have a real ordeal ahead of me, but I am up for the challenge - very much so.

Thanks for thinking of me, and the best wishes :)

#63 mumto4boys

Posted 12 May 2014 - 11:47 PM

WOW - just logged on and saw this in the 'we are talking about' window.


Jules- OMG, I'm so happy for you!

That is an amazing turn around! I can only imagine that this has just been the worst few months for you but it looks like it has now all been worthwhile.

I'm not religious at all but I hope that your surgeons will be the most amazing that they can be and guided by whatever they believe in to do their best.


I promise, I'm not a stalker but it is funny what you remember about some posters. I think it was you that had three gorgeous daughters ( now 4 I know) with similarly themed names in your sig when I was new to EB.

I guess most of them must be school aged by now and old enough to get a sense of what you have been going through.

I'm so pleased that you will most certainly be around for your 4 DD's for many, many, many years to come now.

Truly wonderful news and I hope that the others facing tough circumstances at the moment eventually end up with similar success stories.

#64 Fossy

Posted 13 May 2014 - 12:09 AM

Sending you all positive vibes.

Jules that is a wonderful turnaround, all the best with your upcoming surgery. Onwards and upwards.

#65 mummabear

Posted 13 May 2014 - 10:28 PM

That put a big smile on my face Jules. :) thank you for updating.

#66 WinterIsComing

Posted 13 May 2014 - 10:50 PM

I could not read and not leave a comment....The best of luck, all you brave ladies, and especially you, jules363, I pray you all achieve complete cure. With every year you hang on, more and more effective treatments become available.

#67 jules363

Posted 15 May 2014 - 07:18 PM

Thanks everyone :)

Yes, mumto4boys....my four daughters are all named after American states, lol.

#68 mumto4boys

Posted 24 June 2014 - 11:53 PM

Hi everyone, I hope you're all travelling as well as possible. Something dragged me in here tonight and I just read back a little and saw that you were scheduled for surgery in late June Jules.

I'm not sure if you've had it all ready or are about to, but, good luck and hoping that everything goes as well as possible.

#69 Bella Laird

Posted 29 June 2014 - 07:43 PM

Hi Feral WibbleWobble, (and everyone else who's posted that they are going through some treatment as well)

I'm watching my mum go through bowel cancer (after unrelated breast cancer) at the moment... she had a complete colon removal and a stoma attached.

Hope everything is going well for you with your treatment and you have a good prognosis.

All I can say from an onlooker's perspective is if something feels not right with your new normal, get your specialists to check it... and fix it... straight away. Don't let up until they look into it.

Edited by BlairD, 29 June 2014 - 07:44 PM.



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