Hello! New & overwhelmed!

[wren]

Hello! Life has been turned upside down, I'm sure mostly everyone here can appreciate that statement. I'm 28 and have had no real health issues before, so my diagnosis has been the biggest shock of my life. 3 weeks ago I went into hospital with severe abdominal pain and was sent home diagnosed with IBS. 4 days later and not much relief the severe abdominal pain returned and I had to return to hospital. Turns out I had a ruptured bowel and when I was operated on a tumor was found in my large bowel. That was removed and further scans showed cancer spread in my stomach, liver and lungs. It's stage four bowel cancer and the doctors say it's incurable. I'm refusing to believe this and wish to prove them otherwise. I think I'm still in shock. I've been very lucky to have such amazing family and friends supporting me, but would love to speak to others who also have been diagnosed. I'm still recovering from the surgery (23 staples later) and contending with my stomar, which really frustrates me the most. It's such a pain and a constant reminder of what's happened. I decided to name it (Horhe), so that when I can finally remove it (wishful thinking) my friends and I are going to have a wake and a celebration :) I started treatment/chemo yesterday and it wasn't as bad as I'd envisaged. I was most worried about the needle going into my chest/port, but the nurse used a numbing cream which meant there was no pain when the needle went in. Phew! Today I've been feeling really low in energy and disliking the little "device" filled with more chemo that I've had to keep attached to me for two days. I go back to hospital tomorrow to get it unplugged and this will happen every two weeks. After four treatments we're doing more scans to see whether the treatment is working or not... I've been so many emotions. More sensitive than normal and I'm a pretty emotional person. I'm still confused about how this could have happened, I've been angry and mainly frustrated at being housebound and having to rely on other so much. I'm a pretty independent and social person, so this has been hard as well. I came back from living in London in January, so in that regard I'm so happy I'm home with my family and friends around. It would have been horrible for this to happen away from home. I really want to talk to others who have been diagnosed with cancer... I feel like I'm going a bit batty and everyone keeps telling me to be strong, which doesn't really help! I'm trying to stay positive and take one day at a time, but struggling. I'm finding meditation really helps and music too. I sing, and happy I still have the ability to do that!! Hope this hasn't been too long an intro, but there's so much going on in my head that I could write a novel. Hello and I look forward to connecting to the community 🙂

[maddie86]

hi there.. feel free to vent on this site!! my boyfriend was 22 when he found out he had advanced bowel cancer.. i can still remember that shocking night.. like a living nightmare!! he told us he had an inoperable tumor.. 6 weeks ago they operated on him and removed it all! he had chemo for what seemed like ages then radiotherapy for around 12 weeks.. all in all was good results! hes now having liver surgery as we speak then the plan is to do the lungs.. a long and lengthy process yes indeed but definatly worth the end result!! he was also left with a permanent stoma which was really hard in him but he didnt have a choice.. being so young and going through this is the worst, but having a great support network makes all the difference.. never give up hope! im always here for a chat when you need to talk.. you will have a lot of down days but good ones to!! lean on those people that will let you and forget the ones that wont.. you are stronger than you know 🙂 good luck with the chemo!! my poor guy had so many probs with his pic line (is that what you have?) he kept getting rashes and it kept coming out! all the best 🙂

[harker]

Hi wren Thanks for your post. I liked reading it because you write so directly and clearly. You have a very conversational style and I find it easy to engage. It sounds to me like you are on the right track taking it one day at a time as you certainly have had a rough time of late. I used to call my portapack pumper thingy 'Malcolm'. It was strapped to me for four days at a time and injected a mil or so of chemo into my arm every hour. 100 mils was strapped to my chest with the pump and lasted the four days. When it injected chemo it made a little noise which reminded me of the noise made by the remote controlled ashtray in the bank in the movie Malcolm. It made a 'zippy' little noise and then went quiet for the next hour. I am curious as to why you chose Horhe as the name for your port. Anything to do with Jorge Luis Borges. Hope so. H

[Sailor]

Hi Wren Thank you for posting. As Harker says you have a nice conversational style of writing, but you also have retained your sense of humour. I can understadn the shock of it all - that happenes to all of us. One day you are a normal person, sometimes without symptoms of any kind. The next your are being treated for cancer. It's a bit of a life shattering change. Don't feel you have to be strong. It is veery easy to end up in the 'prison of the positive'. Everyone tells you to be strong and rewards you for being positive, when the reality is we can sometimes feel absolutely awful and we have a right to feel that. A friend of mine tells me that the best advice she was given when she got her diagnosis was to go out into the middle of the backyard and cry until there were no more tears and then cry some more. Yes take one day at a time. thre will be days when you feel great and days when you feel awful - take it one day at a time. Don't be afraid to write heaps and put it on this site. That is what it is for. It is a great way to express what you feel and you don't have to apologise later. Take care Sailor

[richard61]

Hi Wren; I was diagnosed colon cancer in Dec 2009 (48 years old ). I have go through surgery and chemo ( folfox 4 ). I am stage 3, it is look like your one is stage 4. I think you just start for your cancer journy. It will be hard when you do round 7 or 8 of chemo.Please be good prepare for it. I know a couple of people in this site having this cancer,but still OK, like Samex... Please keep come back,I go to chinese group (cancer council ) in Sydney every Friday.It help a lot. Two people met to liver one met to lung, no one like you met to stomach.

[richard61]

Hi Wren; I suggest you to have a look Mr Anderson's webb. http://howthelightgetsin.net/ KRISTIAN ANDERSON Regards Richard

[wren]

Hi Maddie, thanks for your reply. Wow 22 is so young! It is a bit like a nightmare. I'm not sure there will be any more surgery for me, at least that's what the doctors are saying. I don't know if that's a good thing or a bad thing at this point, as I'm still recovering from the first surgery. I agree that the support network is so important! I feel so lucky I've had amazing people around to help me at this time. I just came back from living in London, so I'm happy I'm home so much now! Thanks for your support and well wishes! :) I have a port in my chest and it worked well first time round thankfully. All the best to you and your man!

[wren]

Hi Harker, Thanks for your message. Yeah a day at a time is what's getting me by. My main issues seem to be around digestion, managing that between operations and treatment and everything else is a struggle at times. And now the mental side of things is starting to creep up on me and thinking too much, not being able to sleep well some nights. Haha Malcom is a good name. I'm yet to name my port... I was thinking Felicity, because she is one of my favourite fictional characters (American series) and her surname on the show is Porter 🙂 I wish mine made a noise in a way, that would at least make it somewhat comical! But didn't it get annoying? Oh yes I spelt "Horhe" phonetically, it should be Jorge! Thanls for that correction. Now it looks more international and special haha. Sorry to say I didn't name after your man, but thanks for pointing me in his direction. I love discovering new things and he seems like a rather fascinating man. Rel

[wren]

Hi Sailor, Thanks for your reply. Yes, everyone telling me to be strong is so frustrating. I *am* strong and always have been and I have no choice at this point but to be strong.. otherwise I'd just be making things worse for myself, if I let it all defeat me. Yeah, I think letting it all out helps. A few days after chemo I was not feeling good at all, between cramping and nausea and I just started yelling at myself and my body and insisting it stop hurting me!!! It felt good and who knows, maybe it helped? I've been soooo emotional, I don't usually cry so much, so yes crying is a good release too. Nods... a day at a time is what's getting me through it all. And laughing. I am loving watching funny movies and Modern Family too. It's really making me laugh with my whole belly (even though I have to hold it in place at times!). Thanks again Sailor 🙂

[wren]

Hi Richard, Thanks for the reply. I am also on Folfox4 and will start Avastin this week (not looking forward to an addition and potential new side effects). Yes, I've just started and the past month has been in slow motion and felt like a year to be honest. I feel like I'm at the bottom of a huge and foggy mountain. Do you have any advice on how to best prepare for the ongoing chemo?? I really would love to go to a group that meets in person.. I think I need it at this point.